: 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

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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