From a Prominent Death, Some Painful Truths

NEW YORK TIMES

June 24, 2008
Second Opinion
From a Prominent Death, Some Painful Truths
By DENISE GRADY

Apart from its sadness, Tim Russert’s death this month at 58 was deeply unsettling to many people who, like him, had been earnestly following their doctors’ advice on drugs, diet and exercise in hopes of avoiding a heart attack.

Mr. Russert, the moderator of “Meet the Press” on NBC News, took blood pressure and cholesterol pills and aspirin, rode an exercise bike, had yearly stress tests and other exams and was dutifully trying to lose weight. But he died of a heart attack anyway.

An article in The New York Times last week about his medical care led to e-mail from dozens of readers insisting that something must have been missed, that if only he had been given this test or that, his doctors would have realized how sick he was and prescribed more medicine or recommended bypass surgery.

Clearly, there was sorrow for Mr. Russert’s passing, but also nervous indignation. Many people are in the same boat he was in, struggling with weight, blood pressure and other risk factors — 16 million Americans have coronary artery disease — and his death threatened the collective sense of well-being. People are not supposed to die this way anymore, especially not smart, well-educated professionals under the care of doctors.

Mr. Russert’s fate underlines some painful truths. A doctor’s care is not a protective bubble, and cardiology is not the exact science that many people wish it to be. A person’s risk of a heart attack can only be estimated, and although drugs, diet and exercise may lower that risk, they cannot eliminate it entirely. True, the death rate from heart disease has declined, but it is still the leading cause of death in the United States, killing 650,000 people a year. About 300,000 die suddenly, and about half, like Mr. Russert, have no symptoms.

Cardiologists say that although they can identify people who have heart disease or risk factors for it, they are not so good at figuring out which are in real danger of having an attack soon, say in the next year or so. If those patients could be pinpointed, doctors say, they would feel justified in treating them aggressively with drugs and, possibly, surgery.

“It’s the real dilemma we have in cardiology today,” said Dr. Sidney Smith, a professor of medicine at the University of North Carolina and a past president of the American Heart Association. “Is it possible to identify the group at higher short-term risk?”

What killed Mr. Russert was a plaque rupture. A fatty, pimplelike lesion in a coronary artery burst, and a blood clot formed that closed the vessel and cut off circulation to part of the heart muscle. It was a typical heart attack, or myocardial infarction, an event that occurs 1.2 million times a year in the United States, killing 456,000 people.

In Mr. Russert’s case, the heart attack led to a second catastrophe, an abnormal heart rhythm that caused cardiac arrest and quickly killed him. An electric shock from a defibrillator might have restarted his heart if it had been given promptly when he collapsed at his desk. But it was apparently delayed.

Dr. Smith and other cardiologists say the main problem is that there is no way to figure out who has “vulnerable plaques,” those prone to rupture. Researchers are trying to find biomarkers, substances in the blood that can show the presence of these dangerous, ticking time-bomb plaques. So far, no biomarker has proved very accurate.

Mr. Russert’s heart disease was a mixed picture. Some factors looked favorable. There was no family history of heart attacks. Though he had high blood pressure, drugs lowered it pretty well, said his internist, Dr. Michael A. Newman. His total cholesterol was not high, nor was his LDL, the bad type of cholesterol, or his C-reactive protein, a measure of inflammation that is thought to contribute to plaque rupture. He did not smoke. At his last physical, in April, he passed a stress test, and his heart function was good. Dr. Newman estimated his risk of a heart attack in the next 10 years at 5 percent, based on a widely used calculator.

On the negative side, Mr. Russert had low HDL, the protective cholesterol, and high triglycerides. He was quite overweight; a waist more than 40 inches in men increases heart risk. A CT scan of his coronary arteries in 1998 gave a calcium score of 210, indicating artery disease — healthy arteries do not have calcium deposits — and a moderate to high risk of a heart attack. An echocardiogram in April found that the main heart pumping chamber had thickened, his ability to exercise had decreased slightly, and his blood pressure had increased a bit. Dr. Newman and his cardiologist, Dr. George Bren, changed his blood pressure medicines, and the pressure lowered to 120/80, Dr. Newman said.

Another blood test, for a substance called apoB, might have been a better measure of risk than LDL, some doctors say. Others disagree.

Some doctors say people like Mr. Russert, with no symptoms but risk factors like a thickened heart, should have angiograms, in which a catheter is threaded into the coronary arteries, dye is injected, and X-rays are taken to look for blockages. Some advocate less invasive CT angiograms. Both types of angiogram can identify plaque deposits, and if extensive disease or blockages at critical points are found, a bypass is usually recommended. But the tests still cannot tell if plaques are likely to rupture, Dr. Smith and other cardiologists say. And Mr. Russert’s doctors did not think that an angiogram was needed.

An autopsy found, in addition to the plaque rupture, extensive disease in Mr. Russert’s coronary arteries, enough to surprise his doctors, they said. Had they found it before, Dr Newman said, a bypass would have been recommended. Dr. Bren differed, saying many cardiologists would still not have advised surgery.

Given all the uncertainties, what’s a patient to do?

“You want to be sure your blood pressure and lipids are controlled, that you’re not smoking, and you have the right waist circumference,” Dr. Smith said.

Statins can reduce the risk of dying from a heart attack by 30 percent, he said.

“But what about the other 70 percent?” Dr. Smith asked. “There are other things we need to understand. There’s tremendous promise, but miles to go before we sleep.”

: Death and Dying Today

Introduction: Death and Dying Today

Most Americans have fears and concerns about the "dying" and "death" processes. People fear experiencing pain and unrelieved symptoms; they worry that when "nothing more can be done," their healthcare providers will abandon them; and they are concerned that their family will lose all their savings paying for life-sustaining technology and invasive, debilitating treatments.

Despite the fact that many medical and technological advances have been made over the past century, people are dying in institutions with strangers caring for them, as they suffer from prolonged, chronic illnesses, and in many cases, receiving expensive, futile treatments that pose an enormous financial burden to their family. Most Americans (70%) would prefer to die in their own homes, yet only half of all deaths occur in hospitals and fewer than 60% of these hospitals offer specialized end-of-life services.[1]

So why are so many Americans unable to die at home? Common barriers to the kind of death many Americans would prefer include:

* Failure of the healthcare profession to acknowledge the limits of medicine, leading to futile care and using inappropriate and aggressive curative treatments that can prolong the dying process and contribute to physical and emotional suffering[2];
* Lack of adequate training for healthcare providers, especially in regard to controlling pain and other symptoms;
* Hospice and palliative care services are poorly understood; a delay in initiating these services prevents patients and families from reaping the full benefits of these services;
* Issues regarding access to care, regulation of controlled substances, and insurance coverage compound confusion around hospice and palliative care; and
* Denial of death prevents many from accessing palliative care.

Case Study: Gregory

Gregory is a 38-year-old male with sickle cell disease. Eight months ago he had a stroke. After being released from the hospital, he was transferred to a skilled nursing facility, because his 76-year-old mother, Mrs. Brown, could no longer care for him at home. Gregory is an only child and his father died when he was 18 years old. He now has hemiparesis and dysphagia. Over the past 6 months, he has been hospitalized 8 times because of pain, osteonecrosis, or pulmonary hypertension, all related to his sickle cell disease.

Gregory's hematology clinical nurse specialist, Megan, is concerned about the multiple hospitalizations over such a short period. She recalled Gregory confiding in her during his last hospitalization that he felt life was not worth living anymore. Upon this admission, for pain control and hypertension, Megan assessed Gregory's physical, psychological, social, and spiritual needs. Gregory stated that he was having difficulty "going on," and felt that his "life is slipping away." He asked Megan if she could arrange for hospice care.

Megan agreed to talk to the hematologist, Dr. Susan White about this, but she believed that Gregory could survive more than 6 months, which means he would not qualify for hospice care at this time. However, Megan and Dr. White wondered if palliative care would be more appropriate for Gregory. Megan knew that he needed pain and symptom control, support for the best possible quality of life for him and his mother, assistance with decision-making, and assessment and management of physical, psychological, spiritual, and social needs. She also knew it would be vital that he receive this care from an interdisciplinary team. Megan and Dr. White decided to talk with Gregory about both hospice and palliative care.

What Is Hospice?

The word "hospice," a term borrowed from the Middle Ages, was used to designate way-stations for pilgrims on their way to the Holy Land. Dame Cicely Saunders, the founder of St. Christopher's Hospice in London, viewed life as a journey, and just as the pilgrims needed a place of respite to finish their journey, so those near the end of life's journey needed support to complete their passage.

Hospice care is a service delivery system that provides palliative care for patients who have a limited life expectancy and require comprehensive biomedical, psychosocial, and spiritual support as they enter the terminal stage of an illness or condition.[3] Hospice is based on the idea that dying is a part of the normal life cycle, just as birth is. Not only does hospice provide support to the patient, but it also grants bereavement services for the surviving family.[4]

Yet, because hospice is available to terminally ill patients with a life expectancy of 6 months or less, the word has quickly become associated with death. The American culture does not deal well with death and so coming under the care of a hospice program has been seen as a "death sentence," leading many patients and their families to resist admission to hospice. For this reason, some healthcare providers in end of life care began advocating for the use of another concept -- palliative care.

What Is Palliative Care?

Palliative care is no longer limited to just hospice care, even though palliative care began during the hospice movement. Palliative care is a philosophy of care that provides an organized, interdisciplinary system for delivering care. The goal of palliative care is to improve the quality of life of patients and their families who are facing life-threatening illness, through the prevention and relief from suffering. Palliative care provides early identification, impeccable assessment, and treatment of pain and other physical, psychosocial, and spiritual problems.[5-7]

The key difference between palliative and hospice care is that palliative care is appropriate regardless of the stage of the disease or the need for other therapies, and can be rendered along with life-prolonging treatment or as the main focus of care. In addition, palliative care expands traditional disease-model medical treatments to include the goals of enhancing quality of life for patients and family members, helping with decision making, and providing opportunities for personal growth. Palliative care is integral to all healthcare delivery system settings including emergency departments, nursing homes, assisted living facilities, home care, outpatient, and nontraditional settings.

Although hospice and palliative care may differ in the length of time they provide care, and financial reimbursements may vary, both services provide interdisciplinary care, holistic care, education and support of patients and their families, and bereavement services.

Excellent Care Requires Exceptional Communication

In the case study, Gregory's suffering and prolonged illness prompted him to seek alternatives that might help to reduce his painful symptoms and improve his quality of life. His advanced practice nurse, Megan, understood the importance of listening and being present so that she would fully comprehend what Gregory was saying and requesting. She also consulted with his physician, social worker, and physical therapist so that everyone understood what Gregory was saying. Megan and Dr. White met with Gregory to talk about hospice and palliative care. They explained to Gregory that to qualify for hospice, it would need to be determined that he was, indeed, terminally ill, with a life expectancy of 6 months or less.

Because of his age Gregory did not qualify for Medicare, although after his stroke he was placed on a long-term state disability plan by his former employer. This disability plan had benefits that are similar to Medicare, and also required a prognosis of 6 months or less. Although both Megan and Dr. White did not believe that Gregory was imminently dying, they thought that he would certainly benefit from palliative care. Pain and symptom control; support in attaining the best possible quality of life for him and his mother; assistance with decision-making; assessment and management of physical, psychological, spiritual, and social needs; as well as the involvement of an interdisciplinary team would enhance his care. Gregory agreed that palliative care was a viable option and one that he wanted to explore.
Figure: Quality-of-life model.
Figure. (click image to zoom) Quality-of-life model.
Ferrell BR, Grant M. Quality-of-life model. Duarte, Calif: City of Hope National Medical Center; 2000. Republished with permission. Available at: http://prc.coh.org

Megan immediately began to address multiple dimensions of Gregory's care using the Quality of Life Model (Figure). This model helped both Megan and Gregory to identify actual or potential problems within each of the 4 dimensions. For example:
1. Physical Dimension

Gregory was in constant pain and had intermittent nausea. He experienced fatigue, chronic constipation, episodes of anorexia, and was unable to maintain his home and garden. Severe osteonecrosis to both hips, plus the hemiparesis made it difficult for him to walk. Five admissions to the emergency department for priapism during the past 3 years was a constant reminder of the cruelty of sickle cell disease.
2. Psychological Dimension

Gregory was anxious and fearful about his condition and distraught that he could not obtain good pain relief.
3. Social Dimension

Gregory was sad that he was unable to assist his aging mother with chores at home. He missed the socialization he used to have with his 3 young cousins, friends in his neighborhood and church. The dysphagia made eating less pleasant than it used to be and he was self-conscious about eating with others. He lost 20 pounds in the previous 2 months and his clothes no longer fit.
4. Spiritual Dimension

Gregory felt hopeless because he knew his life would be short. He stated that his suffering was due to God punishing him for past sins. He wanted to make the last months of his life as positive as possible, but he could not find peace among all the pain and suffering.

Communication is the foundation to excellent palliative care. Pain and symptom management, assessment of cultural beliefs, maintenance of ethical and legal care, and acknowledgment of loss, grief, and bereavement issues are all dependent on precise communication. It is important for nurses to communicate well so they can advocate for their patients and family members. When nurses were asked what they wish they had been taught in nursing school related to caring for the terminally ill, the number 1 response was "how to talk to patients and their families about dying."[8,9]

Although terminal illness is a family experience, imparting accurate information so that individuals can make informed decisions is critical. Studies have shown that communication needs are different between patients and family members. For example, the communication needs of a patient include: need for information, opportunity to disclose feelings, maintaining a sense of control, and a need for knowing that their life has meaning and purpose. Communication needs of family members include: need for information, permission to speak, and to be listened to.[10-12] Patients and their families expect nurses and the entire interdisciplinary team to be honest with them and to elicit and respect their values and goals.

Nonetheless, barriers to good communication exist, including:

* Fear of our own mortality;

* Lack of experience with death and dying;

* Fear of expressing emotion;

* Demonstrating an insensitivity to the situation by frequently interrupting communication, patronizing, and not allowing patients and their families the opportunity to express their own views;

* Feeling guilty because the health team was unable to "cure" the patient;

* Fearing that they may not know the answer to a question or whether to be honest when answering a question;

* Disagreeing with patient or family decisions; and

* Experiencing personal grief issues (ie, nurse may have recently lost a parent, child, pet, etc).

Attentive Listening

Listening is a critical aspect of communication and can be used to circumvent some of the barriers listed above. Nonverbal messages are constantly sent to patients and their families. Body language, eye contact, gestures, and tone of voice are all examples of nonverbal communication. Studies have shown that 80% of communication is nonverbal.[13] We are afraid to speak with patients and their families, because we are terrified of saying the wrong thing. Yet, only 20% of what we communicate is verbal.

As Megan, the nurse in the case study, began to assess Gregory's understanding about hospice and palliative care and sought to determine what his goals of care were, she asked open-ended questions, leaned forward, did not interrupt, nodded her head, and encouraged communication by making comments like "I see," or "tell me more." When Megan repeated a few words from his last sentence, Gregory knew that she was listening. For example, after Gregory told Megan that he knew his health was failing and that he wanted to consider hospice or palliative care, she responded by saying, "so you would like more information about hospice or palliative care?" Reflecting and clarifying what Gregory said is important so Megan was clear about what was just shared with her. For instance, "So, Gregory, if I understand what you have just said, you feel that your health is deteriorating and you want to talk to someone about hospice or palliative care."

When Gregory wanted to continue the conversation about his life coming to an end, this conversation may have been uncomfortable for Megan, but she understood that the ability for Gregory to verbalize his thoughts and fears was important. Although Megan might have been tempted to change the subject to avoid a difficult conversation, she chose to "bear witness" to what Gregory was sharing with her. When he talked about his impending "passing," Megan used the words "death" and "dying." She encouraged Gregory to talk about the past and to reminisce. She knew that for him to tell his story, it would be a powerful reassurance and reminder that his life had true meaning. Megan talked to Gregory about the possibility of creating a legacy for his young cousins and friends. She suggested that he could write a letter for his cousins to read when they graduate from high school or on their wedding days.

Gregory's Story Continues: A Conflict With The Decision to Provide Palliative Care

Before Gregory was discharged from the hospital back to the skilled nursing facility, Megan contacted the local hospice and set up the palliative care referral. The palliative care team would meet with him the next day. When Gregory was transferred back to the skilled nursing facility, his primary nurse, Diane, was waiting to talk with him. She stated that she had been contacted about his desire to receive palliative care. She did not hesitate to let Gregory know that she was very surprised by this decision, she disagreed with it, and she felt "he was giving up and no longer willing to fight his disease." She reminded him of his age and that he was the youngest client in the skilled nursing home. Diane said to Gregory, "I wish you had talked with me about this first, because I have cared for you longer than the nurses at the hospital." Although Diane knew that it was important to support Gregory's decision and right to seek palliative care, she was sad to witness Gregory's steady physical decline and realized that her response was from her own grief.

Many times, nurses disagree with decisions that patients make. However, it is important to remember that these are the patient's decisions. Gregory is of sound mind and has made a difficult decision because of the continued downfall of his health. Though nurses, who spend more time with patients than any other healthcare providers, want to support patients' decisions, many times it is complicated and painful for them to do so. Perhaps Diane had ethical concerns and did not fully understand Gregory's end-of-life goals. She may have been dealing with some personal unresolved grief issues, and knowing that Gregory's health was deteriorating, she may have remembered experiences that were very painful for her.

Although Diane voiced her concern and disagreement with the palliative care decision, she did recommend a family conference with the palliative care team, Gregory, Mrs. Brown, and herself. Diane believed that this would be the best way to break the news to Gregory's mother, so a meeting was planned for early the following week.

Family Meetings

The primary purpose of a family meeting is to discuss goals of care and advance care planning. In addition, the family meeting assures consistent information, identifies areas of discord, and provides the opportunity to formulate strategies of excellent interdisciplinary care.[14] A family meeting can improve communication between the patient, family, and the entire team about all end-of-life issues. The meeting must be well-planned, using the 7 basic recommendations for conducting a family meeting.[15]

1. Prepare for the meeting. Diane contacted the palliative care team, Gregory, and his mother about the meeting. She made sure that the entire healthcare team reviewed his medical history and issues before the meeting. The team discussed and clarified Gregory's goals for the meeting. The healthcare team determined that Diane and the palliative care nurse practitioner, Dan, would co-lead the meeting. Diane reserved a conference room in the skilled nursing facility for the meeting, a quiet and private place with seating for all.

2. Open the meeting. Diane welcomed Dan to the meeting, introduced the palliative care team to Gregory and his mother, and reviewed Gregory's medical situation. Diane began the conversation by saying, " Mrs. Brown, I would like to make sure that you understand how Gregory is doing and answer any questions that you have regarding his decision to begin palliative care. We are fortunate to have a palliative care team that sees patients here in the skilled nursing facility. I have known Dan and his team for 2 years, and you and Gregory will both find them to be helpful in addressing many of your current needs."

3. Elicit family understanding. Dan asked Mrs. Brown what she had been told about Gregory's current condition. Mrs. Brown said she knew that Gregory's health has not been good and that "he is not getting better." She told the group that she lost a brother and a nephew to sickle cell disease, and so she knows what would probably happen to her son. "I lived in denial and have not wanted to discuss these thoughts with anyone. I have just always prayed since he was born that he would be healed and grow up like other boys." After the team listened to Mrs. Brown express her fears, Diane asked her if there was anything else that she would like to discuss. Mrs. Brown stated that she would support her son's decision to seek palliative care and that she "wanted the very best for him."

Understanding the difficulty of a parent watching a child die, the team encouraged her to spend as much time with Gregory as she could. Diane arranged for a social worker to assist Mrs. Brown with transportation to the skilled nursing facility at least once a week. She was asked to bring in childhood pictures of Gregory for opportunities to reminisce. Mrs. Brown acknowledged that she appreciated the extra effort to obtain transportation for her to come to the skilled nursing facility. She was also encouraged to bring other family members with her to these visits, such as Gregory's cousins.

4. Elicit patient and family values and goals. Ask patients and family members key questions about their own values and goals (Table). Dan asked Mrs. Brown, "Given our conversation today, what are your hopes for Gregory?" "Gregory, what are your hopes? Is there something special that you have always wanted to do -- see a good friend, go to some wonderful place?" "Gregory, can you help us to understand what we need to know about your religious/spiritual beliefs and practices so that we can honor those as we care for you?"

5. Deal with decisions that need to be made. Before leaving the family meeting, Dan and Diane made every attempt to achieve a common understanding of the issues discussed. They reassured Gregory and Mrs. Brown that the primary goal of the palliative care team and the staff at the skilled nursing facility would be to honor Gregory, his wishes, his desires, and his dreams by preventing suffering and by managing his symptoms. Dan assured Diane that the palliative care team would work closely with the skilled nursing facility staff and that Gregory's excellent care would depend on everyone communicating well.

6. Close the meeting. Dan and Diane briefly summarized what was discussed in the family meeting. They asked if there were any further questions. "We appreciate how difficult this must be for all of you, but we respect you for trying so hard to make these decisions." Dan informed those in attendance that the palliative care team would be back the following day to see how Gregory was doing on the new regimen of pain and antinausea medications. He made sure that everyone had the palliative care team's contact information. He assured them that someone was on-call 24-hours a day, 7 days a week. Gregory asked the chaplain if she would meet with him sometime the following week. Mrs. Brown made the same request for herself. The chaplain agreed to meet with each of them. Diane requested that the palliative care team meet with Gregory, Mrs. Brown, and the certified nursing assistants (CNAs) caring for Gregory in 1 week.

7. Follow up on the meeting. Dan and Diane documented the family meeting in Gregory's chart. Diane met with the CNAs who cared for Gregory every day, and reviewed his new plan of care. She also listened to each CNA as they articulated their grief over Gregory's decline.

Advocacy Can Require Both Communication and Conflict

Whenever a group of people are working for the good of a patient and his family, expect to have conflicts along the way. Conflicts, however, do not have to be negative encounters. Many times, conflict brings out discussions that may not have otherwise taken place. So when conflict arises, take a step back and identify your own emotions. Try to describe those emotions, but do not display them. Ask yourself the following questions: "Is this about me? Is this about me getting my way?" Nurses and other members of the team must be prepared for disagreements that arise from decisions that patients and/or their families make. Cultural differences among patients, families, and team members may cause also cause conflict in decision-making.

Realizing that conflicts will occur, recognize that it is important to define the area of disagreement. Attempt to obtain agreement on differences, even if they cannot be resolved. Always keep the patient and family's best interests in mind.

When nurses and physicians communicate well, the patient wins every time. In order to advocate for the best care possible for Gregory, it is vital for all members of the interdisciplinary team to re-visit their goals for Gregory periodically and make sure they are consistent with his goals. Every member of the team must document conversations they have with Gregory and Mrs. Brown. Regularly scheduled team meetings are an appropriate tool for carrying out excellent communication. This benefits not only Gregory, but his mother and the team, as well.

Gregory's Life Comes to an End: Final Thoughts

Fourteen months after his first conversation with his hospital-based clinical nurse specialist, Megan, about hospice or palliative care, Gregory died peacefully among his family and friends at the skilled nursing facility where he had lived for almost 2 years. He experienced 2 additional strokes in the last 3 months of his life, and he died from the multiple complications of sickle cell disease. Gregory was conscious until 72 hours before he died. Just before he became unconscious, Diane, his nurse, had brought in homemade soup for Gregory, as she had done many times before. Although Gregory could not eat the soup, he thanked her for her many efforts to care for him over the past 2 years. He expressed his gratitude for her kindness to him and his mother.

Shortly after Gregory lost consciousness, Diane provided the advance care plans that Gregory had written a couple of weeks before. In those plans were his wishes to have a memorial service and to have his church choir sing a special hymn. He requested that every effort be made to make the service a wonderful memory of a very well-lived life. Because the palliative care team had been so involved in his care over the past 14 months, he had been encouraged to take opportunities to share his love, thoughts, regrets, disappointment, and gratitude with his mother, family members and friends. He enjoyed his weekly visits with the hospice chaplain, as well as with his pastor. He confided in his pastor that he was at "perfect peace" spiritually.

Four hours before he died, his mother arrived at the long-term care facility. She brought 2 of his favorite music CDs and the staff played them in his room until he died. The family was encouraged to say whatever they wanted to him -- believing that he could hear every word. Although this was very difficult for Diane, she was there to assist the family and the staff. Gregory was peaceful and died with his mother's hand in his.

Well-orchestrated care begins with excellent communication. Communication is a complex process in all circumstances, but becomes particularly challenging in terminal illness. Each team member's main objective should be to advocate for what he or she believes is in the patient's best interest. True advocacy is achieved when the patient and family have a primary role in the plan of care.

To be invited to be present with a patient and his/her family in the last days, hours, minutes of life is truly a privilege and honor. The relief of a patient's suffering is a wonderful gift not only to the patient, but to the family as well. Family members will replay those last moments of life with their loved one for the rest of their lives. We must be committed to take this one opportunity to make this a peaceful, respectful, and sacred time.
Conclusion

End-of-life care is a privilege for the nurses and other healthcare providers who do this work. Therefore, it is important to become educated, to communicate well, to practice with integrity, and to care for those who are dying with great dignity and compassion.
About ELNEC

The End-of-Life Nursing Education Consortium (ELNEC), a national educational program administered by the City of Hope (COH) in Duarte, CA and the American Association of Colleges of Nursing (AACN) in Washington, DC, is designed to enhance palliative care in nursing. The project provides undergraduate and graduate nursing faculty, CE providers, staff development educators, specialty nurses in pediatrics, oncology, hospice, critical care and geriatrics, and other nurses with training in end-of-life care so they can teach this essential information to nursing students and practicing nurses. To date, over 4600 nurses from across the United States have attended one of 47 national ELNEC train-the-trainer courses. Nurses have attended ELNEC to improve their knowledge about palliative care and to learn how to better communicate with patients, their families, and other members of the healthcare team.
Funding Information

The End-of-Life Nursing Education Consortium (ELNEC) Project is a national end-of-life educational program administered by City of Hope National Medical Center (COH) and the American Association of Colleges of Nursing (AACN) designed to enhance palliative care in nursing. The ELNEC Project was originally funded by a grant from the Robert Wood Johnson Foundation with additional support from funding organizations (the National Cancer Institute, Aetna Foundation, Archstone Foundation, and California HealthCare Foundation). Materials are copyrighted by COH and AACN and are used with permission. Further information about the ELNEC Project can be found at www.aacn.nche.edu/ELNEC.

Authors and Disclosures

As an organization accredited by the ACCME, Medscape, LLC requires everyone who is in a position to control the content of an education activity to disclose all relevant financial relationships with any commercial interest. The ACCME defines "relevant financial relationships" as financial relationships in any amount, occurring within the past 12 months, including financial relationships of a spouse or life partner, that could create a conflict of interest.

Medscape, LLC encourages Authors to identify investigational products or off-label uses of products regulated by the US Food and Drug Administration, at first mention and where appropriate in the content.

Author

Pam Malloy, BSN, MN, OCN
Director, End-of-Life Nursing Education Consortium (ELNEC) Project, American Association of Colleges of Nursing (AACN), Washington, DC

Disclosure: Pam Malloy, BSN, MN, OCN, has disclosed no relevant financial relationships.

Rose M. Virani, RNC, MHA, OCN
Senior Research Specialist, Department of Nursing Research, City of Hope, Duarte, California

Disclosure: Rose M. Virani, RNC, MHA, OCN, has disclosed no relevant financial relationships.

Kathe Kelly, BSN, OCN
Coordinator, ELNEC Geriatric Project, Department of Nursing Research, City of Hope, Duarte, California

Disclosure: Kathe Kelly, BSN, OCN, has disclosed no relevant financial relationships

Hollye Harrington Jacobs, RN, MS, MSW
Program Coordinator, ELNEC-Pediatric Palliative Care Project, City of Hope, Duarte, California

Disclosure: Hollye Harrington Jacobs, RN, MS, MSW, has disclosed no relevant financial relationships.

Betty R. Ferrell, PhD, RN, FAAN
Principal Investigator of ELNEC Project and Research Scientist-Department of Nursing Research and Education, City of Hope, Duarte, California

Disclosure: Betty Ferrell, PhD, RN, FAAN, has disclosed no relevant financial relationships.

Editor

Susan Yox, RN, EdD
Editorial Director, Medscape Nurses

The Inhospitable Hospital: No Peace, No Quiet

The Inhospitable Hospital: No Peace, No Quiet

Have you ever dropped a heavy book in a library? Or sneezed in church? Or had your cell phone ring during a concert? You know what happens -- everyone turns around to see where the sound came from, and the culprit is duly ashamed of making noise in a "quiet zone."

We never talk loudly in libraries, churches, or funeral homes out of respect for their traditions of quiet. We even whisper in museums. Isn't it odd that in the one place where we can actually disturb someone, we don't worry as much about making noise? The same culture of quiet just doesn't exist in a hospital the way it does in a theater during a play.
How Noisy Is Healthcare?

Healthcare just keeps getting noisier. The average daytime sound level in acute care hospitals grew from 57 decibels (dB) in 1960 to 72 dB in 2005.[1] Nighttime noise is just as severe as daytime noise, and weekends are no quieter than weekdays.[2] In 1960, nighttime noise averaged 42 dB(A) compared with 60 dB(A) today.[1] Peak noise levels in hospitals can be as high as 85-90 dB(A) -- comparable to being 3 feet away from a food blender or standing near traffic when a motorcycle rumbles by. (Most discussions of noise use an A-weighted sound scale, expressing sound in dB(A) -- see description later in this article.) The World Health Organization (WHO) recommends that background noise in a patient's hospital room should be no greater than 35 dB(A) during the day, 30 dB(A) at night, with peaks no higher than 40 dB(A).[3] Noise levels in excess of these guidelines are believed to disturb sleep, contribute to stress, and interfere with communication.[4]

Engineers and acoustic experts Ilene Busch-Vishniac and James West have a lot of experience measuring sound in hospitals. A few years ago, they characterized the sound environments of a broad range of patient care areas at Johns Hopkins Hospital, from pediatric intensive care, medical-surgical units, and emergency department to operating rooms and oncology floor.[1] Using a precision sound level meter, Busch-Vishniac and West recorded sound levels as a function of location, time of day, and frequency, in both new and old hospital buildings, and compared findings to published hospital noise studies from around the world. "We came to the conclusion that regardless of country, regardless of type or size of hospital, and regardless of type of patient care unit or time of day, there is a fairly narrow range of sound levels in hospitals, and all exceed recommended levels."

Busch-Vishniac explains that the problem in hospitals is all of the hard surfaces and right angles that reverberate, or reflect sound, and few surfaces that absorb it. Soft or sound-absorbent surfaces aren't hospital friendly because they can harbor micro-organisms and are difficult to clean.

Table 1 represents average sound levels, measured in various patient care environments of different hospitals. For comparison, Table 2 provides typical sounds and corresponding dB levels.

Understanding Noise and Sound Level Measurements

Noise is measured as a sound level, in dB. One dB is one tenth of a bel (named for Alexander Graham Bell). A dB is not a unit of measurement; rather, it is a number that represents how much a sound differs from a reference point.

The threshold of hearing is 0 dB(A), and the sound of a rocket launching is 180 dB(A). The human ear can tolerate sound up to about 120 dB(A); sounds above 85 dB are associated with hearing loss. Most discussions of noise in hospital settings use an A-weighted sound scale, expressing sound in dB(A). A-weighting is a method of standardizing sound measurement that takes into consideration the sensitivity of the human ear to certain frequencies. An A-weighted sound level meter contains a filter whose response to frequency is similar to the human ear.

The dB scale is logarithmic rather than linear. To make matters even more confusing, sound intensity and loudness, although related, are not exactly the same. Sound intensity is an objective measure. Loudness is what is perceived by the human ear. Sound intensity that increases by 3 dB is perceived as twice as loud, and an increase of 10 dB(A) is 10 times as loud.[12] So a sound of 30 dB(A), which corresponds to a whisper at a distance of 3 feet, is perceived as 10 times as loud as the 20 dB(A) sound of rustling leaves. Add another 10 dB(A) to reach 40 dB(A), and the sound is perceived as 100 times as loud (Table 2).

Investigators studying sound levels in clinical areas like those in healthcare institutions usually find that sound level is continually fluctuating. Sound levels in these areas are often reported as Leq, which stands for equivalent sound level. Leq represents the sound level of an imaginary continuous signal, within a given time interval, that would produce the same energy as the fluctuating sound.

Sounds greater than 80-85 dB(A) are dangerous, particularly when sustained or repetitive. A sound at 85 dB(A) is 100,000 times higher in sound pressure than the recommended daytime level of 35 dB(A) for patient areas.[12] Both the amount of noise and the duration of exposure are factors in hearing loss. Sensitive hair cells of inner ear and the auditory nerve can be damaged by an intense brief impulse, like an explosion, or by continuous exposure to unsafe noise levels. Hair cells, once damaged, do not grow back.[13]

Noise: Unwanted Sound

The neonatal intensive care unit (NICU), full of sleeping babies, should be a quiet environment. In reality, the NICU is far from quiet.[2,11] Infusion pumps, monitors, and ventilators used to treat sick babies are plentiful, and all have alarms that sound frequently. Telephones ring, doors open and close, packages are torn open. And babies cry, sometimes very loudly.

One day a mother said to me in the NICU that the sound of her baby's cry was "music to her ears." What she meant was that her baby's cry was a normal, welcome sound that made her realize that her baby was going to be okay. Most loud sounds in a hospital, however, are not welcome. Thinking of noise as unwanted sound makes it easier to see that any sound can be interpreted as noise and be a source of annoyance to patients who are trying to rest and recover. Staff members conversing in the hallway, supply carts rolling by, a scale being dragged down the hall -- all are just typical workday sounds to us but perceived as noise by patients.

A good example of this occurs in the emergency department (ED). Most caregivers who work in the ED thrive on the intensity and fast-paced work of caring for trauma patients. The ED may well be the noisiest place in the hospital, 24 hours a day, yet staff working there may not be aware of the noise level.[14] It is no wonder that patients being held in the ED awaiting an inpatient bed would prefer boarding on the ward to boarding in the ED.[15]

Some sounds are pervasive in hospitals, adding significantly to the overall sound level, although we might not notice their sources. Examples are hospital ventilation, cooling and heating systems, refrigerators, vending and ice machines, automatic doors, water running, paper towel dispensers, pneumatic tube systems, printers, and carts rattling down the hallway. Outside, helicopters land on the roof several times a day, and the sound of sirens can be heard approaching the emergency entrance. Even with the use of personal pagers, the overhead paging system is necessary to alert the staff of code situations and other events requiring urgent attention. The typical hospital is people-dense, and people generate a tremendous amount of speech noise. The most frequent sources of noise in one intensive care unit -- rubbish bins, chair scraping, and talking -- are all caused by human activities.[4]

Hospital noises can affect staff and patients differently. A patient may be more bothered by the sound of inappropriate laughter than the sound of the ice machine.[16] Staff, on the other hand, might be more annoyed by alarm sounds. Frequent alarm sounds contribute to overall noise levels in patient rooms and intensive care units. The high number of false alarms can render clinical staff impervious to the sound of alarms.[17]

How Noise Affects Patients

Noise is antithetical to a therapeutic environment. More than a nuisance, noise is a real health hazard.[3] Although the burden of morbidity attributable to noise isn't known, there are indictors that the effects of noise on physical and mental health are significant. One of the most serious implications for patients in a continuously noisy environment is an increased risk of hypertension and ischemic heart disease.[3] Noise-induced secretion of cortisol[18] may be a mediator of cardiovascular responses to noise. Noise studies have also documented delayed wound healing, aggressive behavior, psychiatric symptoms, and increased rehospitalization rates.[3] Moore and colleagues[19] found that surgical patients identified noise as the biggest irritant during hospitalization, and, postoperatively, surgical patients in a noisy environment require more pain medication than those in a quiet setting. Noise can even increase symptoms of heartburn in patients with gastroesophageal reflux disorder.[20]

Noise also interrupts sleep in hospitalized patients, some of whom are particularly vulnerable to sleep disruption. Patients at high risk of having their sleep disturbed by noise include children, very low birth weight infants, pregnant women, anxious individuals, the elderly, and residents of long-term care facilities. The WHO recommends that for good sleep, background sound levels should not exceed 30 dB(A), with individual sounds no greater than 45 dB(A). Intermittent noise might be more disruptive to patients' sleep than continuous noise.
Noise in the NICU

A unique problem exists in neonatal intensive care because preterm infants are exposed to a developmentally inappropriate acoustic environment. Sounds in the NICU are louder, more high-pitched, and more random and unpredictable than those in the womb.[2] Preterm and ill neonates exhibit many unfavorable responses to noise, including unstable heart rate, respiratory rate, and oxygen levels. To promote sleep, the combination of continuous background sound and operational sound in infant rooms should not exceed an hourly Leq of 45 dB(A), the hourly L10 no greater than 50 dB(A) (level that comprises no more than 10% of the time), and transient maximum noise levels in the NICU should not exceed 65 dB(A).[21] To promote effective communication and minimize stress, noise levels in staff work areas, lounge areas, and family areas should not exceed an hourly Leq of 50 dB(A) and an hourly L10 of 55 dB(A), with peaks no greater than 70 dB(A).[21]
Noise in Long-term Care

The gradual, almost insidious hearing loss that accompanies aging is so common, it has its own word: presbycusis. Presbycusis affects both ears equally and is greater for high-pitched sounds.[22] The individual with presbycusis might be able to hear the low, rumbling sound of a truck, but not the ringing of the telephone.[21]

The pattern of noise in a nursing home, like that in the hospital, follows human factor activities.[14] Sound levels of 55-70 dB(A) were measured in one nursing home, levels that were lower than those in a teaching hospital. Residents transferred from long-term care to acute care might experience increased stress from additional noise.[14]

Long-term care facilities could do more to promote independence of their residents by creating living environments that enhance, rather than aggravate, the diminished hearing acuity of the elderly.[23] Susan Mazer, President and CEO of Healing HealthCare Systems, blames poorly designed physical spaces and routines often found in long-term care facilities. Noise reverberates in large dining rooms with high ceilings and hardwood floors. Radio and television played on overhead paging systems contribute to high background noise that makes locating ambient sounds difficult for residents. Intercoms are often unintelligible, and distracting noise such as vacuum cleaners, dishwashers, and fans are simply noxious. Music, used inappropriately, becomes a nuisance rather than an asset.[23]

How Noise Affects Staff

Noise is an environmental stressor. No one likes noise intruding into their personal or work space. The problem is, noise is pervasive in the hospital, so we become accustomed to it and miss opportunities to reduce it. We may not even be aware of the impact of noise on our ability to concentrate on tasks, or if we are, we tend to try to work around excessive noise rather than eliminating it. When our work environment becomes noisy, we compensate by moving away, raising our voices, or repeating ourselves; in essence, by exerting more effort and working harder.[24]

Sound is considered part of the "psychosocial work environment" in healthcare facilities.[25] Excessive noise can increase perceived work pressure, stress, and annoyance. Noise contributes to fatigue, emotional exhaustion, and burnout. Tachycardia and other physiological responses to noise stimuli have also been demonstrated.[26]

Noise is a constant threat to patient safety by making patient-staff and staff-staff communication more difficult.[24] Although the Joint Commission doesn't specify maximum sound levels for different patient care environments, they mandate that the ambient sound environment should not exceed a level that would prohibit clinicians from clearly understanding each other.[27] Speech intelligibility is compromised most in environments with excessive reverberation.

Is Noise Avoidable?

It's one thing to measure and document high sound levels, but another thing altogether to make lasting changes to reduce noise. Looking at specific sources of noise measured in 2 different hospital intensive care units, MacKenzie and Galbrun[4] believe that 34% of the sources of noise were avoidable, and another 28% partially avoidable. Classifying objectively measured noise as all or partially avoidable can aid priority setting in noise reduction efforts.

Many healthcare facilities have attempted to reduce noise in patient care areas by posting "Quiet, Please" signs, educating staff about noise, and other behavioral interventions. The problem with this approach, according to Busch-Vishniac, is that trying to make permanent changes by influencing human behavior just won't work in the long term. Philbin and Gray[2] found that staff behavioral changes alone weren't sufficient to control noise; their research demonstrated that physical changes to the environment achieved a greater reduction in noise.
Solutions -- What Works? What Doesn't?

Controlling noise is an important intervention in creating a healing environment.[25] Excessive noise, and its effect on rest, are high on the list of complaints made by patients on postdischarge patient satisfaction surveys.[19]

Simply educating staff about noise and noise-reduction measures such as lowering voices and keeping personal pagers on vibrate may not be effective in reducing noise levels.[19] Nurse reports and physician rounds have been moved away from the patient's bedside in an effort to reduce noise.[19] Closing doors to patient rooms reduces noise on general floors but not in intensive care because the sounds from equipment and alarms increase with the door shut.[19] Offering earplugs to patients to reduce irritation from noise has been suggested, although patients should be warned that earplugs won't completely eliminate noise.[28] Others have used foreground music to mask environmental noise.

Busch-Vishniac emphasizes that the most effective way to provide quiet environments for patients, including sick neonates, is with private rooms, and, indeed, private rooms have a beneficial effect on sound.[29] The most effective physical change for noise reduction is to add sound-absorbing material to the environment. Sound-absorbent panels that are resistant to micro-organisms are available for ceilings and walls. Busch-Vishniac and West successfully reduced sound levels on an oncology unit by attaching acoustic fiberglass panels wrapped in antibacterial fabric to the walls and ceilings. This change dropped noise levels immediately by 5 dB and reduced reverberation time by a factor of more than 2.[30]

Based on findings from hospital noise studies, in which they identified 86 different sources of noise, MacKenzie and Galbrun[4] offer these practical solutions for reducing noise in hospital environments:

* Replace metal, lidded trash cans with cans that have a damping system to close the lid slowly or with plastic bins.

* Evaluate use of monitors and alarms to ensure that false alarms are minimized and monitor use is customized to patient need. Set trigger points appropriately.

* Use resilient materials on chair legs to reduce noise from chairs scraping on hard floors.

* Lower telephone volume.

* Change to ring binders with a lever and spring for quieter opening/closing

* Use plastic rather than noisy metal carts.

* Cupboard doors and drawers should also have damping systems for gradual closure.

* Educate housekeeping staff about noise sources and noise reduction related to cleaning activities.

* Use "Quiet, Please" posters to remind staff to reduce noise; turning overhead lights down has been shown to induce people to lower their voices.

When innovations are being considered for the patient care environment, they should first be evaluated for sound production. For example, motion-sensing paper towel dispensers, although convenient and beneficial for infection control purposes, are extremely noisy, particularly when located near patients.[31] In addition to considering the sound impact of new purchases, it might be possible to make adjustments to existing equipment to reduce the noise level.[32]

Recently, some novel approaches to reducing sound levels in neonatal intensive care have been introduced. One company offers a monitoring system that leads to a "Quiet, Please" light that turns on when noise levels are exceeded. Another vendor offers a warning system of colored lights based on traffic lights -- green, yellow and red -- providing a visual cue. Green indicates an acceptable sound level, yellow warns that sound is approaching dangerous levels, and red calls for immediate quiet.

There is no "one-size-fits-all" plan for noise reduction. Facilities aiming to solve their noise problems must first examine the sound environment by conducting a sound and noise study. Susan Mazer provides a step-by-step method, including a data collection tool, to assess the sound environment in an individual department or facility.[16] Mazer suggests using both quantitative (dB levels) and qualitative (patient satisfaction surveys) to develop a complete picture of the sound environment and provide direction for sound-reduction efforts.[33]

Authors and Disclosures

As an organization accredited by the ACCME, Medscape, LLC requires everyone who is in a position to control the content of an education activity to disclose all relevant financial relationships with any commercial interest. The ACCME defines "relevant financial relationships" as financial relationships in any amount, occurring within the past 12 months, including financial relationships of a spouse or life partner, that could create a conflict of interest.

Medscape, LLC encourages Authors to identify investigational products or off-label uses of products regulated by the US Food and Drug Administration, at first mention and where appropriate in the content.

Author

Laura A. Stokowski, RN, MS
Staff Nurse, Inova Fairfax Hospital for Children, Falls Church, Virginia; Editor, Medscape Ask the Experts Advanced Practice Nurses

Disclosure: Laura A. Stokowski, RN, MS, has disclosed that she has served as a consultant for Draeger Medical.

Fact and Fiction: Debunking Myths in the US Healthcare System

Fact and Fiction: Debunking Myths in the US Healthcare System

Umut Sarpel, MD; Bruce C. Vladeck, PhD; Celia M. Divino, MD; Paul E. Klotman, MD

Ann Surg. 2008;247(4):563-569. ©2008 Lippincott Williams & Wilkins
Posted 06/06/2008
Abstract and Introduction
Abstract

The United States has the most expensive and complex healthcare system in the world. Despite the magnitude of funds spent on the system, Americans do not achieve the high standards of health seen in other developed countries. The current model of health insurance has failed to deliver efficient and effective healthcare. The administrative costs and lack of buying power that arise out of the existing multipayer system are at the root of the problem. The current system also directly contributes to the rising number of uninsured and underinsured Americans. This lack of insurance leads to poorer health outcomes, and a significant amount of money is lost into the system by paying for these complications. Experience from other countries suggests that tangible improvements can occur with conversion to a single-payer system. However, previous efforts at reform have stalled. There are many myths commonly held true by both patients and physicians. This inscrutability of the US healthcare system may be the major deterrent to its improvement. A discussion of these myths can lead to increased awareness of the inequality of our healthcare system and the possibilities for improvement.
Introduction

Although most people readily agree that the US healthcare system is deeply troubled, there is little consensus on how to resolve its problems. The current system is so cumbersome and confusing that anything but the most superficial discussion seems to require an advanced knowledge of medicine and public policy. As a result, both patients and their physicians are alienated from trying to understand and improve the system. Debates about the plight of the uninsured and the rising costs of health insurance tend to end in an exasperated sigh of resignation to the status quo.

Our peculiar system of employment-based private insurance has been called an accident of history. During World War II, a wage freeze prevented employers from attracting workers by offering higher salaries. However, fringe benefits were not controlled and employers soon discovered that they could compete for workers by providing health insurance packages. This benefit was highly valued by wartime Americans and enrollment in insurance plans soared. Employers willingly participated in this new union because they received financial benefits from the tax-free status of health insurance. Job-linked health insurance gained momentum and evolved into the system that stands today.

Many of the problems encountered in the system are deeply interconnected with other complex issues. For example, it is hard to talk about the reason for the growing number of uninsured without also discussing the history of Medicare/Medicaid, funding for medical education, government lobbyists, and tort reform. These are worthy topics that cannot be addressed within the scope of this paper.

The goal of this article was to give physicians the groundwork to launch conversations about the US healthcare system. The format for this discussion has been adopted from Dr. Robert Lebow's Health Care Meltdown: Confronting the Myths and Fixing Our Failing System.[1] Lebow identified many myths that are commonly held by both patients and physicians; for this discussion we have focused on 5 common misconceptions. The following myths are not intended to be an all-inclusive list of the woes of our healthcare system. However, they represent key and common misperceptions that are stumbling blocks on the path to improvement.

Perhaps it is important to state up front that this effort makes certain assumptions; it is understood that 1) members of a civilized society agree that there is an obligation to provide healthcare to those who need it, and that 2) there cannot be a tiered class system for access to healthcare, although people who are willing to spend more could have the option to do so. Our goal is simple: to spark discussion and focus attention to the issue of inequity of healthcare.
Myth 1: The US Healthcare System Is the Best in the World

This idea has been called the alpha myth because it is fundamentally the root of all other myths.[1] It is the straightforward belief that Americans have access to the highest quality healthcare available in the world. A different way to present this myth is to state that citizens in other countries experience long waits for healthcare, that they must rely on generalists, and that they suffer worse outcomes as a result.

This belief is widespread and well-entrenched in the American mindset. So it is perhaps surprising that in a 10-nation 1990 survey on the level of satisfaction with the national healthcare system, the United States ranked 10th.[2] These results were then reproduced a decade later.[3] Although Americans believe the US system is the best, clearly they are not as satisfied with the healthcare they receive as are citizens of other countries.

In fact, this disparity between perception and reality has been captured in several studies. In the year 2000, the World Health Organization (WHO) dedicated its annual World Health Report to a comparison of healthcare across the globe.[4] In this exhaustive analysis, American superiority was not borne out: the United States ranked 32nd for infant survival, 24th for life expectancy, and 54th for fairness. The fairness ranking was derived from a comparison of the individual financial contribution required with the quality of healthcare received. The current US system is known as a regressive system; that is, the poor pay relatively more for healthcare. In fact, the poorest fifth of Americans spend 18% of their income on healthcare, whereas the richest fifth of Americans spend about 3%.[5] In this type of regressive system, it is clear why about 50% of personal bankruptcies in the United States are related to medical bills.[6] Tragically, 75% of individuals declaring medical bankruptcy had medical insurance at the onset of their illness.[6] Overall, the WHO ranked the United States 37th in the world.

Similar results were found by the Commonwealth Fund in a recently released scorecard on the performance of the US health system.[7] Outcomes in the United States were compared against those achieved by top countries or the top 10% of US states, hospitals, or other providers. The scorecard evaluated multiple indicators of health outcomes, including mortality, life expectancy, and the prevalence of health conditions that limit the capacity of adults to work or children to learn. The average ratio score for the United States was a 69 out of a possible 100.[7] The United States ranked 15th out of 19 countries with respect to preventable deaths before the age of 75, with a death rate more than 40% higher than the benchmark countries of France, Japan, and Spain. The United States ranked last in infant mortality out of 23 industrialized countries, with rates more than double the benchmark countries of Iceland, Japan, and Finland. The United States tied for last on healthy life expectancy at age 60.[7]

Despite these mediocre results in objective parameters of health outcomes, the United States spends far more than any other country for its healthcare. In 2000 the United States spent 13% of its gross domestic product on national health expenditures.[8] The next highest spending countries were Germany at 10.6% and France at 9.5%. In a graph of life expectancy versus health spending per capita, the United States falls far off the curve, both spending more and gaining less than other countries.[4] Another example of this contradiction is seen in the outcome of patients on hemodialysis. Although there are more hemodialysis centers per capita in the United States,[9] when end-stage renal disease patients were matched for severity of disease in Canada and the United States, patients in the United States were less likely to receive a kidney transplant and also had a higher mortality rate while on hemodialysis.[10]
Myth 2: There Will Always Be a Certain Segment of the Population That Remains Uninsured

There is a general misconception that the uninsured are also unemployed, that they represent the marginalized section of society. Epidemiological studies clearly show that this is false: two-thirds of the nonelderly uninsured are employed.[11] And rather than representing an invisible minority, the number of uninsured persons is steadily growing. At last count, there were 46.6 million uninsured people in the United States,[12] but this number is projected to grow to 56 million by 2013.[13] It is notable that one-third of the recent increase in the number of uninsured adults occurred among those with incomes more than 200% of the federal poverty level, and about half the growth was among young adults ages 19 to 34.[14]

The reasons for the rising number of uninsured are many and complex. In part, the character of the US workforce has changed. From 1977 to 1998, there was a decrease in unionized factory jobs from 25% to 15%, with a concomitant rise in service or clerical work from 19% to 29%.[15] Members of unions receive insurance, whereas workers in the service industry typically have no health coverage. This shift in the workforce created a new rank of people, still employed but now without health insurance.

The single most influential factor in the rise of the uninsured has been the increasing cost of health insurance and the growing share that employers expect employees to absorb. In a system in which employment-based insurance is still the dominant mode, a smaller and smaller proportion of employers now offer health insurance to their employees at all.[16] Of those that do, most are increasing the amount that individual employees must contribute at a rate that is rising much faster than employees' incomes. This cost-shifting to employees has had an especially significant effect on the coverage of dependents.[16] Finally, the growing cost of health insurance policies has essentially destroyed the market for individual self-purchased policies in most states.

Even for those with insurance, the growing share of expenses that must be covered out of pocket through deductibles and copayments is a mounting problem. Some health economists have recommended high out-of-pocket payments, as a means of deterring frivolous discretionary use of health services.[17] Judging by certain parameters, cost-sharing is effective. In the widely cited RAND Health Insurance Experiment, between 1975 and 1982 about 4000 patients in 6 cities around the United States were randomly enrolled into 1 of 4 test plans with varying amounts of cost-sharing. Those patients in plans with the largest deductible used 25% to 30% fewer medical services than patients with free care.[18] However, high-deductible plans also resulted in some lower health outcomes: poorer control of blood pressure, corrected vision, and oral hygiene.[18,19] In the subgroup of patients who were poor and sick, the subpar control of blood pressure increased the annual likelihood of death by 10%.[20] Thus, although total physician visits dropped, the financial deterrent did not differentiate between necessary and unnecessary visits. Patients who were unable to afford their copayment, despite the fact that they were insured, chose to forgo necessary visits and suffered a decline in health.[18]

An extraordinary demonstration of the effects of cost-sharing occurred when, in 1996, the province of Quebec instituted a 25% copayment for prescriptions that had previously been free to the elderly and those on welfare.[21] This new policy affected over 1 million Canadians. In the following year there was a reduction in the use of essential medications by 9% in the elderly and 14% in those on welfare (Figure 1). Adverse events rose 117% in the elderly and 97% in those on welfare. Emergency department visits rose 43% in the elderly and 78% in those on welfare.[21]

Figure 1.

Observed and predicted use of essential medication in the prepolicy and postpolicy periods. Reproduced with permission from Tamblyn et al.[21]



Those individuals who are officially insured, but still suffer from lack of healthcare, have been termed the under-insured. They may miss doctors' appointments, leave prescriptions unfilled, or defer recommended laboratory tests. People without any insurance at all represent only the tip of the iceberg; there are far more individuals who are under-insured. Currently, there are an estimated 50 million individuals who are considered under-insured.[22] Meanwhile, the burden of cost-shifting continues to grow. Average yearly premiums have risen precipitously, at far greater rates than general inflation (Figure 2). [23] Rates of copayments and deductibles continue to rise markedly as well, creating increased burdens on family budgets. In the years 1996-1997 and 2001-2002, the average family's out-of-pocket spending rose nearly twice as fast as did family income.[24]

Figure 2.

Cumulative changes in health insurance premiums, overall inflation, and workers' earnings. Reproduced with permission from The Kaiser Family Foundation.



Cost-shifting may decrease initial healthcare spending up front, but it does not decrease the national healthcare expenditure.[21,25,26] The United States, for example, has both the highest insurance deductibles and the highest national healthcare expenditures in the world. As the number of under-insured grows due to the demands of cost-shifting, more and more people will be driven to give up their insurance completely.

Rather than comprising a static group of people, the number of uninsured is steadily rising, and this new generation of uninsured is made largely of people who are employed and have-or recently had-medical insurance. The current system of job-based insurance and cost-shifting are creating this dysfunctional environment.
Myth 3: The Uninsured Have Equal Access to Medical Care Through the Emergency Room

While admitting that the system is flawed, many people feel a sense of complacency, believing that the uninsured still have access to healthcare through emergency departments. Although inconvenient to obtain, the same quality of care is ostensibly available to the uninsured and the insured. Although this is true in theory, it is not realized in practice.

Multiple studies have shown that the uninsured receive less healthcare and have worse outcomes than the insured.[27,28] The Institute of Medicine reports that working-age Americans without health insurance are more likely to receive too little medical care and receive it too late; be sicker and die sooner; and receive poorer care when they are in the hospital, even for acute situations like a motor vehicle crash.[27] After adjusting for age, gender, smoking, and education, lack of insurance alone increases risk of death by 25%.[29]

This increase in mortality is independent of income level.[30,31] In other words, it is not being poor per se that leads to the adverse effects of being uninsured. The lack of insurance interrupts the patient-physician link, which is necessary to pursue good health. For example, diabetes cannot be cured but its effects on the body can be attenuated with strict glucose control and regular surveillance. In a study comparing insured and uninsured patients with diabetes, those lacking insurance had statistically lower rates of the recommended eye and foot examinations, vaccines, glycosylated hemoglobin screening, and checks of cholesterol level (Figure 3). [32] In patients with kidney failure, the uninsured start dialysis at a later stage of disease. Uninsured patients with HIV are less likely to receive effective drug therapy. The uninsured are screened less often for hypertension and are less likely to take blood pressure medication prescribed to them.[27]

Figure 3.

Diabetes management among insured and uninsured adults. Reproduced with permission from The Institute of Medicine.



The uninsured suffer poorer outcomes across surgical disciplines as well. Although the insured meet goals of 90% for cervical cancer screening, 70% for breast cancer screening, and 50% for colorectal cancer screening, a recent study shows that the uninsured fall well short of these goals, reporting 77%, 52%, and 29%, respectively.[31] As a result, uninsured people (or those with Medicaid) have more advanced cancers at the time of diagnosis and/or lower survival rates for breast cancer, colon cancer, cervical cancer, prostate cancer, and melanoma.[27,33,34] Patients without health insurance present more often with perforated appendicitis.[35] Individuals with ulcerative colitis and private insurance are more likely to undergo colectomy than their uninsured counterparts.[36] In a study of over 5000 patients with abdominal aortic aneurysms, those without medical insurance were significantly more likely than individuals with private insurance to suffer rupture.[37] There are a remarkable number of studies that draw a strong correlation between lack of insurance and poorer health.

Finally, the care administered to the uninsured in the emergency department setting is generally more costly to the national budget. When there is no preexisting patient-doctor relationship, the physician finds it more difficult to gauge a patient's symptoms and to rely on follow-up. For example, a patient in the emergency room with mild pain on urination will undoubtedly be prescribed an antibiotic. This same patient, if seen in a generalist's office, might be asked to leave a urine sample and will only be medicated if the culture confirms a urinary tract infection. Similarly, a patient with abdominal pain who might be observed with serial examinations will more likely undergo a computed tomography scan if seen first in the emergency department.

Relying on emergency rooms to provide primary healthcare for the uninsured is clearly a lose-lose situation. The patients themselves experience poorer health outcomes and lost wages, whereas the system suffers from the cost of overly conservative medical decisions.
Myth 4: A Free Market Is the Best Way to Get the Highest Quality Health Insurance for the Lowest Cost

Competition for goods and services generates maximum quality for minimal price. Policy makers often refer to this tenet when defending the multipayer system that exists in the United States. However, a free market only works when the consumer can use buying power to influence the price and quality of goods. In the current healthcare system, insurance is usually purchased by third parties (ie, employers), not by the consumer directly. Also, healthcare is not a discretionary desire; patients cannot delay purchase until prices drop. As a result, the consumer is not in charge of directing the market and thus there is no feedback loop to increase quality or reduce cost. The current system is not a free-market but is instead a for-profit system driven by private insurance providers who are immune to the checks and balances associated with the free-market ideal. This system, which has been in place for decades, has led to increases in healthcare expenditures, poorer health outcomes, and less choice in providers.

Despite the lack of market influence, many consumers still prefer private insurance companies over government-run programs. There is a pervasive belief that the government is fundamentally inefficient, and any private health insurance company will be better run than a public one. In truth, federal health insurance is much more cost-efficient than private insurance because of its ability to streamline costs. The existence of multiple private insurance companies increases the complexity of the system and administrative costs. At present, the US system is overrun by hundreds of for-profit insurance providers. Medicare's administrative costs run less than 3%, whereas private insurance administrative costs are above 16% of budget (Figure 4). [38-40] These funds are spent on increasing revenue by aggressive marketing and billing, and decreasing losses with programs such as utilization reviews (labor-intensive patient chart surveys performed to monitor billing practices). This policy does save individual insurance companies money, but there is a substantial overhead involved in this labor-intensive process. Furthermore, there is no evidence that utilization reviews decrease the national healthcare expenditure, they merely shift the financial burden away from the individual company.[41] Private insurance companies vie to cut their own costs without regard to the effects on the national healthcare expenditures.

Figure 4.

Administrative cost as percent of benefits. Reproduced with permission from The Commonwealth Fund.



Other nations with single-payer systems, where only one agency provides insurance, demonstrate significantly lower administrative costs.[42] In the United States, the total administrative costs alone were over $100 billion in 2002.[38] Furthermore, administrative costs are the fastest-growing component of national healthcare expenditures.[39,40] The largest savings lie in decreasing the administrative costs of insurance companies, which are inseparable from a for-profit system.

Finally, because of the special nature of healthcare, even a functional free market system would not result in high quality medical care for all its consumers. There is no incentive in a profit-driven market to attend to low-yield issues such as mental healthcare, preventive care, and chronic illnesses. These fields of medicine are considered money sinks; although clinically important, they do not generate profit for insurance companies. As a result, these areas tend to be neglected. For example among the elderly, those in HMOs were more likely to suffer a decline in health over a 4-year period than those in a nonmanaged care plan (54% versus 28%).[43] In a profit-driven system, there is no mechanism for those without buying power to affect their care.
Myth 5: We Just Cannot Afford to Cover Everyone

This myth is founded on the belief that you have to pay more to get more; because the United States already spends too much on healthcare expenditures, the nation cannot afford to cover even more of its citizens. But clearly this logic cannot be entirely sound: every other industrialized nation in the world offers universal coverage, and all accomplish it with lower national health expenditures than the United States. Much of our nation's healthcare money is spent on costs that arise directly from a multipayer system with limited coverage. It is vital to identify these spending sinks to find the funds that will provide for universal coverage. Painless cost control measures reduce costs without a resultant decrease in quality of care. Established targets for painless cost control include providing preventive care, training more generalists, controlling drug prices, decreasing unnecessary procedures, and reducing administrative costs in health insurance.

On average, Americans pay more for the same medications than do patients in other countries.[44,45] This disparity has been defended by the assertion that the United States supports the world by developing more new pharmaceuticals, and therefore these research costs result in higher drug prices. This altruistic rationalization is unfounded: combined, the European nations produce on average the same number of new pharmaceuticals per year as the United States.[1] Drug prices can be lowered by preventing pharmaceutical companies from advertising directly to the public, by increasing use of generic drugs, and by collective bargaining though a centralized healthcare system.

End-of-life extreme care is another area of financial inefficiency. Thirteen percent of Medicare's total funds are spent on healthcare provided during the final 60 days of life. Although we pride ourselves on providing cutting-edge technology to our patients, there is clearly a point where technology no longer provides the best care for our patients' needs. Lower-cost measures that increase the quality of remaining life should take precedence over high-cost measures that only extend quantity not quality of life.

Another potential method of cost-control lies in reducing the number of unnecessary medical procedures performed in the United States. The rate of coronary angioplasty in the United States is 300% the rate in Canada, with no associated increase in life expectancy. In 2002, 26% of all births in the United States were by cesarean section.[46] This rate is twice that seen in the next highest country.

Despite these figures, the cost problem in the United States is not solely a matter of overutilization. Other countries with far lower healthcare expenditures have longer hospital stays, perform more imaging, and prescribe more medications than the United States.[44,45] And so even more significant than overuse is overpricing. The United States spends more on healthcare without providing more services than other countries do. This suggests that the difference in spending is largely attributable to higher prices of goods and services: hospitals are more expensive and patients are treated more intensively.[9]

Higher prices for medical goods and services are generated by the incredible complexity of the US system. Whereas in other countries governments bargain directly with suppliers, in the US health system money flows from patients to providers through a vast network of middlemen. This highly fragmented system weakens buying power and results in overall higher prices of goods.

Real-life lessons on cost control can be gleaned from Taiwan's experience. In 1995 Taiwan transitioned from a US-style system to a single-payer system with universal coverage, similar to the Canadian system. Before the switch in 1995, less than 60% of the population was insured. By 2001, 97% of the population had health coverage.[47] What is remarkable is that this marked expansion in coverage was accomplished with essentially no change in national healthcare expenditures.[47]

It is important to recognize that, in one form or another, we already pay for the health costs of the uninsured. The Institute of Medicine estimates that the value of covering the uninsured is $65 to $130 billion per year.[48] A substantial portion of the cost of universal coverage, approximately half, is already in the system and is being spent by the government on the healthcare costs of the uninsured.[49] It is a matter of redirecting funds to create the greatest good for the most people.
Conclusion

In the effort to ameliorate the problems with our healthcare system, recently several programs for reform have been launched. Although well intentioned, these proposals have limited ability to affect change. For example, employer-mandated plans, such as the one recently instituted in Massachusetts, require individuals to purchase private sector insurance coverage. Pretax dollars are used to purchase policies, and a small portion of the cost is covered by an employer contribution. Although this proposal forces individuals to purchase insurance (under fear of tax penalties), it does not guarantee the existence of affordable plans. Serious concerns exist over the long-term financial viability of the program. As enrollment costs continue to rise, insurance companies can give the illusion of affordability by excluding services. Forcing consumers to purchase stripped-down plans does little to improve the quality of healthcare.

Another attempt at reform is through the creation of health savings accounts. Individuals can shelter part of their income from taxes by making deposits in such accounts and using these funds toward medical bills. By definition such programs favor individuals who are in higher tax brackets since they have more to gain from diverting pretax dollars. Obviously, individuals in these higher tax strata are not the appropriate targets for healthcare reform.

Adding graduated increases in coverage, although politically more palatable, has largely failed to impact the lives of the uninsured. Incremental plans such as the State Children's Health Insurance Program (SCHIP) are worthwhile but have failed to defray the ever-rising number of uninsured. Although SCHIP is responsible for a modest decrease in the number of uninsured children by 25% from 1996 to 2005, it has come at higher costs than anticipated.[50] The program is facing funding shortfalls in several states.

In the end, these paths at reform suffer from the same fatal flaw: they leave in place the existence of a multipayer, for-profit system. It is this infrastructure that is the Achilles' heel of the United States healthcare system. The crux of effective reform is the development of a simple, streamlined system of universal coverage by a single-payer.

Financial savings and good patient care flow naturally from universal coverage by a single-payer. All individuals would have access to cost-saving preventive care through generalists. Fewer people would have to rely on inefficient and expensive emergency departments for their primary care. A single-payer system maintains the bargaining power necessary to contract with pharmaceutical companies to lower the costs of medications and biotechnology. In addition, evidence-based utilization standards could be defined to guide selection of medications and procedures.

The largest source of savings in reforming our system would come from cutting the administrative costs associated with multiple private insurance carriers. Competition between for-profit insurance companies drives cost-shifting and ever-increasing out-of-pocket payments for patients. As patients' costs go up, more and more under-insured people are unable to afford healthcare. When many insurance carriers exist, they must compete for patients, and this competition is financed by massive administrative marketing costs. Many experts believe that universal coverage would likely pay for itself by creating a more efficient system.

Universal coverage and a single-payer plan could be created in different ways. Specific proposals have been published by various groups.[51] Universal coverage does not necessarily mean Medicare for all. Certainly, universal coverage could be provided by a single-payer government-run program as in Canada or the United Kingdom. Although this is the most straightforward approach, other countries have developed successful systems composed of private companies coupled with governmental organizations. For example, most of the German population receives its health insurance through sickness funds, which are nonprofit, closely regulated semiprivate organizations. The key is that these companies are required to cover a broad range of medical services and are prohibited from excluding individuals due to illness. Even in countries like Japan and Germany where health insurance is job-linked, times of unemployment, changes in workplace, and periods of self-employment do not create interruptions in healthcare coverage.

Finally, universal coverage and a single-payer plan do not exclude the option for purchasing additional private insurance. Supplemental insurance could exist that would cover nonessential medical care such as cosmetic surgery, private nursing, or even pay for expedited essential care. A new healthcare plan could be tailored to the preferences of the American population.

Myths have the ability to perpetuate themselves in the absence of supporting evidence. The myths concerning the state of the US healthcare system need to be actively dispelled-quickly. There are already overwhelming data showing the dangers of uninsurance and the benefits of universal coverage. There is no more deliberation that needs to be done. We must instead move on to making universal coverage a reality.
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Acknowledgements

The authors thank John C. Fraser for his critical review of the manuscript.
Reprint Address

Umut Sarpel MD, 5 E. 98th St., 15th Floor, Box 1259, New York, NY 10029-6574. E-mail: Umut.Sarpel@mountsinai.org .

Umut Sarpel, MD,* Bruce C. Vladeck, PhD,† Celia M. Divino, MD,* Paul E. Klotman, MD‡

*Department of Surgery, Mount Sinai School of Medicine, New York, New York
†Office of the President, University of Medicine and Dentistry of New Jersey, Newark, New Jersey
‡Department of Medicine, Mount Sinai School of Medicine, New York, New York

Providing Palliative Care in the End

Providing Palliative Care in End-stage Heart Failure

Salima Hemani, MSN, RN; MariJo Letizia, PhD, APN/CNP

Journal of Hospice and Palliative Nursing. 2008;10(2):100-105. ©2008 Lippincott Williams & Wilkins
Posted 05/30/2008
Abstract and Introduction
Abstract

Heart failure, characterized by the inability of the ventricles to fill or eject blood, is a significant problem for patients and their families. This disease is characterized by periods of exacerbation and remission; patients must cope with the unpredictability and variability of symptoms. Classification systems for patients diagnosed with heart failure assist providers, patients, and families in understanding the chronic and progressive nature of heart disease. In the final stage, patients have refractory symptoms despite optimal medical therapy. At this stage, patients may benefit from hospice and palliative care. This article reviews essential points in the care of patients who are living with-and dying from-end-stage heart failure.

Introduction
Despite advances in pharmacologic and nonpharmacologic therapies, the number of people affected by heart failure continues to grow. Approximately 5 million people in the United States have been diagnosed with heart failure, with more than 550,000 newly diagnosed each year.[1] The impact of this condition in the older adult population is particularly significant;[2] 50% of patients with heart failure are over 65 years of age.[3] Heart failure is a syndrome characterized by the inability of the ventricles to fill or eject blood. Characteristic symptoms of heart failure include fluid retention, shortness of breath, and fatigue, especially on exertion.[4] The illness trajectory of heart failure is highly variable despite treatment, with patients experiencing periods of exacerbation and remission of the disease.[2,5] Although patients are often able to tolerate this pattern, each episode can result in a decrease in functional status.[5] Likewise, patients face many challenges as they live with the uncertainty, unpredictability, and variability of this disease.[6]

A particular focus of attention in recent years has been the identification of patients who are at the end stage of heart failure and who would be likely to benefit from hospice and palliative care. Palliative care is the active, total care of patients whose disease is not responsive to curative treatment. Reasonable goals for all patients with end-stage heart failure include reducing the number of symptom exacerbations that require hospitalization and maintaining comfort. This article reviews essential points in the care of patients who are living with-and dying from-end-stage heart failure.
Classification of Heart Failure and Problems With Prognostication

The American College of Cardiology (ACC) and the American Heart Association (AHA) have jointly developed a classification system for patients diagnosed with heart failure. This system assists providers, patients, and families in understanding the chronic and progressive nature of heart disease and helps direct treatment interventions. At Stage A, patients are at high risk for developing heart failure because of pre-existing conditions, including coronary artery disease, hypertension, and diabetes mellitus. At Stage B, patients have structural heart disease and left ventricular systolic dysfunction but are asymptomatic at rest. At Stage C, patients have systolic dysfunction and are experiencing symptoms or they have a history of prior symptoms of heart failure. Finally, at Stage D, patients have refractory symptoms, including dyspnea and fatigue at rest, despite optimal medical therapy. At Stage D, patients are considered to be at the end stage of the disease, and they select either extraordinary treatment interventions or aggressive hospice and palliative care.[1] The New York Heart Association (NYHA) has a similar staging system for heart failure based on the functional status of the patient; stages are graded from one to four. Table 1 compares the ACC/AHA and NYHA categories of heart failure.

Sudden death can occur at any of the above stages, but specific predictors of sudden death in patients who have heart failure have yet to be fully determined.[7,8] However, sudden death is associated with unstable ventricular arrhythmia and occurs more frequently in patients with low ejection-fractions who experience syncope of unknown etiology.[1] A prolonged QRS interval and the presence of a left bundle branch block indicate poor left ventricular function and are additional markers for sudden death.[9] The possibility of sudden death, an unpredictable terminal phase, and a lack of prognostic markers of heart failure make prognostication a significant challenge for healthcare providers.[2,10,11] Several variables associated with mortality have been identified, however, including diminished functional status, cachexia, frequent hospital admissions, failure to respond to optimal therapy, and an identifiable reversible cause of heart failure exacerbation, such as anemia, infection, arrhythmia, or medication.[9] The presence of uremia, liver failure, symptomatic arrhythmia resistant to treatment, concomitant HIV, and delirium is also associated with poor short-term outcomes from heart failure.[10] Patients older than 70 years of age with multiple medical comorbidities, patients with frequent firing of an implantable cardioverter defibrillator (ICD), and patients with a history of cardiac arrest and resuscitation are also thought to have poorer prognoses.[9] Laboratory markers associated with higher mortality include an increased serum creatinine level (> 3.2 mg/dL), an increased blood urea nitrogen level (> 42 mg/dL), a decreased sodium concentration (< 134 mmol/L), and low systolic (< 115 mm Hg) and diastolic (< 55 mm Hg) blood pressures.[12]

Despite the widespread recognition among providers that heart failure is a chronic and progressive condition, patients and families may believe that heart failure is a benign condition, even in the later stages.[11] In contrast to patients who have cancer and other diseases with a clearer trajectory, patients who have heart failure may have a poorer understanding of the disease itself and a lack of recognition that heart failure is a terminal illness at the end stage.[11] Difficulty accepting the fatality of heart failure may lie, in part, with the "roller coaster" pattern of exacerbations and remission, in which patients are able to bounce back after being near the brink of death.[11] Although patient and family education ideally includes information about the disease itself-signs and symptoms indicative of exacerbation of the disease, actions and adverse effects of medications, and ways to enhance functional capacity, including lifestyle modification strategies throughout the course of the disease-information regarding prognosis, including signs of deterioration, must also be included as a process over time.[2,5]
2005 ACC/AHA Practice Guideline Update, Including End-of-life Considerations

To assist providers in the management of heart failure, the ACC/AHA practice guidelines were updated in 2005 and include end-of-life (EOL) considerations.[1] Specifically, the following guidelines are recommended: (a) ongoing patient and family education regarding prognosis for functional capacity and survival, (b) patient and family education about options for formulating and implementing advanced directives, (c) discussion regarding the option of inactivating ICDs, (d) continuity of medical care between inpatient and outpatient settings, (e) components of hospice care to relieve suffering, including opiates, and (f) examination of and work toward improving approaches to palliation. More specifically, the updated guidelines direct providers to discuss EOL care options with the patient and his or her family when symptoms persist despite optimal medical therapy. This discussion includes the role of hospice and palliative care services.[1] A review of the literature indicates that in the United States, such communication about EOL care is inadequate.[13]

A crucial component of such communication is advance care planning. Patients and families should be given the opportunity to discuss advance directives early in the course of illness and reassess preferences with changes in clinical status. Regardless of the stage of heart failure, it is appropriate and advisable for the patient to complete an advance directive. In particular, providers encourage patients to complete a Power of Attorney for Healthcare, in which patients designate a surrogate to speak on their behalf when they are unable to do so. Of course, in addition to designating the surrogate and signing the document, patients must convey their preferences for treatment and care to the surrogate. They must also be assured that such preferences can always be changed.[2]

Information about resuscitation can also be elicited from patients at any stage of heart disease. Patients and families are reminded that resuscitation only applies in a situation of cardiac or pulmonary arrest. Patients' preferences regarding resuscitation may also change over time.[9] In discussing resuscitation preferences with patients who are at the end stage of heart failure, consideration is given to the discomfort associated with these procedures. Likewise, providers recognize that resuscitation outcomes are poor with this patient population, particularly at the time of imminent death.[14,15]

The issue of ICD placement and deactivation is included in the heart failure practice guidelines. ICDs are used for secondary prevention of death from life-threatening arrhythmias, particularly for patients who have a goal of life prolongation.[1] ICDs offer little benefit to patients with end-stage heart failure, however.[16] When death is imminent, deactivation of the ICD may contribute to patient comfort, because repeated shocks delivered by the ICD can be painful to the patient and difficult for the family to witness. ICD deactivation is achieved by a noninvasive procedure: a magnet is placed over the patient's device, which disables its sensing and ability to deliver an electrical charge to the myocardium.

Discussion of ICD deactivation by providers is a component of advance care planning, yet the literature indicates that such discussion often does not occur. For example, one research investigation revealed that only one-fourth of patients with these devices were informed of the option of deactivation; of those informed, 22% of the discussions occurred within just a few days of the patient's death.[17] One recent recommendation is to incorporate patient preferences regarding device deactivation when the informed consent for ICD implantation is obtained.[18] In situations in which the patient and/or surrogate decision maker do express preference for ICD deactivation, this information must be documented and communicated to the healthcare team members.
Hospice Eligibility Criteria and Referral

In the US, patients are eligible for hospice care reimbursement when a physician certifies that they are likely to have a life expectancy of 6 months or less. Although it is difficult to predict a palliative phase with a 6-month timeline in patients with end-stage heart failure, such patients are eligible for hospice enrollment. Table 2 presents criteria to assist healthcare providers in determining the appropriateness of hospice care. Each of the criteria, including a diminished ejection fraction, refractory symptoms, and functional decline, is documented to ensure hospice coverage. Unfortunately, even with such criteria, hospice and palliative care is underused in patients who have heart failure.[6,10] Lack of hospice referral by providers is likely related to many factors, including a lack of understanding of the role of hospice, lack of an identifiable terminal phase, and concerns about meeting hospice referral criteria.[6]

Hospice and palliative care focuses on meeting the physical, psychosocial, and spiritual needs of patients and their families. An interdisciplinary approach is used, with the patient at the center of care. Fundamental goals include managing symptoms effectively and decreasing the burden of illness for patients and family members.[8] In end-stage heart failure, care is enhanced when there is collaboration between the cardiologist, who is an expert in heart failure, and palliative care providers, who are expert at dealing with terminal illness.[2,9]
Aggressive Symptom Management in Advanced Heart Failure

Patients who have end-stage heart failure experience multiple symptoms that require frequent and ongoing assessment and evaluation of interventions for effectiveness. Both drug and nondrug approaches are used. Patient and family support and education are critical, and the plan of care is coordinated with members of the interdisciplinary team. In contrast to treatment for patients who are dying from cancer, aggressive medical treatment, including infused inotropes and pacemaker placement, continues to be applicable in patients who have end-stage heart failure. However, diagnostic tests and medical interventions that do not contribute to comfort are generally not included in the plan of care.

General palliative recommendations include activity as tolerated, a diet with mild salt restriction, fluid restriction, and protection from infection. Patients are more comfortable when the symptoms of heart failure are well managed, and medications are continued as long as the patient is able to tolerate them. The following medications may be prescribed (see Table 3 for commonly used medications from each class): diuretics, angiotensin-converting enzyme inhibitors (ACE inhibitors), angiotensin receptor blockers, beta-blockers, spironolactone, and digoxin. Spironolactone is recommended for patients who have refractory symptoms and have recently been hospitalized. Careful monitoring of serum potassium is done to avoid development of hyperkalemia associated with spironolactone.[1]

In one investigation of patients with end-stage heart failure, 88% reported breathlessness, 75% reported pain, and 69% identified fatigue as troublesome symptoms.[19] Dyspnea can be particularly bothersome to patients and their families; orthopnea and paroxysmal nocturnal dyspnea may also be present. Dyspnea associated with volume overload is managed with diuretic and vasodilator therapy.[2,5] Opioid therapy provides relief because these medications reduce preload and after load; opioids have also been found to improve breathlessness, possibly because of action in the midbrain centers.[20] Nonpharmacologic treatment for fluid retention includes a mild salt restriction, possible fluid restriction, elevation of the lower extremities and the head of bed, and avoidance of nonsteroidal anti-inflammatory drugs and calcium channel antagonists. Patients may also benefit from use of supplemental oxygen by way of a nasal cannula, fans and fresh air, or a cool fan across the cheeks and face.[5] In patients whose fluid retention and dyspnea persist despite these therapeutic approaches, discussion of intravenous (IV) infusion of inotropes may take place. The decision about IV infusion therapy is made with careful consideration of the burden to the patient and family.[1]

The pain experienced by patients who have end-stage heart failure can result from cardiac and noncardiac sources; it is often reported as pain all over the body.[2] Common causes of cardiac pain include angina and edema, whereas noncardiac pain results from comorbidities and medical interventions.[5] Generally speaking, opioids are recommended for the relief of pain regardless of its etiology.[5] Nonsteroidal anti-inflammatory drugs are not recommended in heart failure because these medications reduce the benefits and effectiveness of diuretics and ACE inhibitors.[9] Nonpharmacologic approaches to pain management are also part of every patient's treatment plan. Such approaches include repositioning, relaxation, distraction, and alternative approaches, including pet therapy, music therapy, and aromatherapy.

Fatigue is also commonly reported in patients who have end-stage heart failure; this symptom is in turn related to functional impairment.[16] Fatigue results from heart failure itself, comorbidities, including anemia, infection, and nutritional deficiencies, and/or medications.[5,21] Fatigue is also related to psychological and situational factors. Management of fatigue is challenging and requires multidimensional strategies.

One additional symptom that is underrecognized and underreported in end-stage heart failure is depression.[2,9] Medications to help treat depression include selective serotonin reuptake inhibitors; tricyclic antidepressants are avoided because of the potential for hypotension and arrhythmias in this population.[5] Nonpharmacologic interventions include psychosocial and spiritual support, including involvement of social services and pastoral care. A recent prospective observational study assessed the relationship of depression to death or hospitalization in patients who have heart failure. The results suggested an increased risk of death and cardiovascular hospitalization in patients with increased depressive symptoms. Thus, it is imperative that patients with heart failure be screened for depression and that it be managed appropriately. [22]

As the patient nears death, progressive withdrawal occurs; patients generally experience increasing weakness, less interest in eating, and less interest in interacting with people and the environment. Comfort measures are provided, including repositioning and skin and mouth care, while attempts to aggressively control symptoms continue. Signs of approaching death include further changes in the level of consciousness, diminished urine output, changes in the breathing pattern, and progressive coolness in the extremities. During this time, family members are supported by members of the hospice and palliative care team.
Conclusion

In the 16th century, an anonymous physician wrote that the goals of healthcare are "to cure sometimes, relieve often, and comfort always." The goal of comfort with relief of suffering remains a priority for healthcare providers in the treatment of end-stage heart failure. Although sudden death can occur and periods of exacerbation are common in heart failure, hospice and palliative care are important approaches for patients in the end stage of the disease. Advance directives allow patients to express treatment preferences even when they are unable to speak for themselves. Aggressive symptom management and the provision of psychosocial and spiritual support are intended to prevent suffering and lead to a peaceful and dignified death.