Journal of Gerontological Nursing

Your Turn-The following question was asked of the readers of the Journal of Gerontological Nursing: In your practice, what experiences of patients and family members could be classified as "a good death" or a positive process of dying?

Abstract

Death arrives; whether we accept it or deny it, death persists. The living must survive, gain strength from the loss, and add to the concept of a positive process of dying.

Sandra P. BI uhm, RNC, BSN

Staff & Charge Nurse

Holly Manor Nursing Center

Mendham, New Jersey

As a RN beginning my 40th year in nursing, I have been privileged to spend the final hours and moments with hundreds of dying men, women, and children.

I remember the hot summer night, 1958 in Buffalo, New York, as a student nurse on the night shift. The tiny 9-year-old boy dying of renal tuberculosis told me, "I'm going to die, but Daddy says he'll be here when God brings my new body." I assured him that was true, and I prayed his was "a good death."

Twenty years later I listened as a 29-year-old mother, dying of cancer, agonized over, "My children won't even remember me." I tried to assure her that her loved ones would keep her memory aUve, and I prayed hers was "a good death."

Years later, there was an 88-yearold woman who wondered if she could be held and rocked until she died - and she was.

Just 3 years ago, a 64-year-old minister told me, "The journey is so easy if you just let it happen," as I sang his favorite hymn for him. I hope his was "a good death."

Each time I am permitted to be a part of my patients' journeys to death, I am awed anew. In what other career does one experience such intimacy? The wonder of it all never ceases to amaze me.

Marlene N. Lacy, RNC

Nurse Consultant, Healthcare of Iowa

Cedar Rapids, Iowa

Certainly, individuals and families must be able to preserve their experience of wholeness throughout the dying process. Those who have lived surrounded by family, friends, or both should be able to have those dear people near them as they prepare to die. The same holds true for favorite possessions and activities. Because death is a part of life, although certain concessions might need to be made to assist the individuals through the dying process, death and dying should be approached with the same sense of wholeness that life and living was approached by the individuals.

I have a great deal of experience in both acute and long-term care. No matter what the setting, I have found that hope is an important element in the process of dying. According to Robert Frost, "Hope doesn't Ue in a way out, but in a way through." Hope in dying can mean the hope of a pain-free day, the hope of a visit from a cherished grandchild, the hope of attending a long anticipated concert, or the hope of hearing a taping of that concert. Sensitive nurses can find many ways to offer hope as that way through the dying process and make the process a positive experience. Although some ways of providing hope may seem odd or unusual, they are appropriate if they fit the dying individuals and their sense of wholeness.

I recently cared for a dear, petite woman who was put on puddingconsistency liquids and pureed foods because of silent aspiration. She requested regular foods and liquids, stating she would rather die from aspirating than "live" eating and drinking what she considered disgusting. She was already in a serious state of decline from endstage Parkinson's disease. The nursing staff advocated for this woman. After carefully explaining the risks of her choice to eat and drink regular foods and liquids, we asked the doctor to honor her…

The definition or interpretation of "a good death" or a positive process of dying varies with each individual. Some may believe that "a good death" is without pain and occurs swiftly. Others may believe that "a good death" is the culmination of a "good life." Some individuals regard death as life's task that must be endured before moving to the next level of development. There are also some individuals believe that "a good death" involves being surrounded by loved ones, maintaining a quality of life until death, and having control over bodily functions. I prefer to use the term, a positive process of dying, rather than "a good death," because it is less subjective in nature. Providing care for dying patients allows observation of and participation in the dying process. It also facilitates the use of the nursing process to identify the needs of patients and their families and to implement an appropriate plan of care.

Patients who maintain a positive, accepting outlook during the dying process remain positive at the time of death. Their families have an easier time resolving grief. They focus on the happy times, remember the deceased patients with love, accept what has happened, and continue their lives content with their memories. In contrast, patients and families who deny the inevitable have a difficult time accepting death and resolving grief. I have observed experiences of many dying patients and their families. In my opinion, the experiences that classify as positive processes of dying are those in which families or loved ones are present at the bedsides, treat the individuals with dignity, express their love, and allow the dying individuals to say goodbye. These interactions at the bedside are mutual demonstrations of love and letting go that reinforce the positive atmosphere. Any experience of dying patients and their families, however, can be classified as a positive process of dying if the individuals involved believe it to be positive. Death and the dying process are subjective experiences that provoke myriad emotions from participants and observers.

Elizabeth /Vl. Rich, MS, BSN1 PHN, RN, C

Vocational Nursing Instructor

Marie College of Medical Careers

Vista, California

In this 70-bed Intermediate Care facility, we are fortunate to have several Certified Nursing Assistants who feel comfortable reading or reciting scripture, singing gospel hymns, and/or sitting with residents who are at death's door. Residents leave this world in peace with their "extended family" at their bedside, which is a positive process of dying. Many tears are shed as we all feel a part of ourselves has gone on also.

Robert M. Taylor, RN1 BSN

Director of Nursing

Skyline Terrace Nursing Home

Woodstock, Virginia

A good death occurs when there is total honesty about what is occurring, appropriate sadness and laughter, no pain or respiratory distress, and a process in which the caregivers are able to promote quality of life for the patient on a dayto-day basis.

Elizabeth Jaquinta, RN, MSN

Community Nursing Home Nurse

Veterans Administration Medical Center

Dublin, Georgia

A good death, in the convalescent setting, is often a family-oriented, hospice-involved situation. The elderly patients may be very well aware the "beginning of the end approaching." The sensitive nurses involved in a positive process of dying have, in most cases, discussed the pain control options, the last wishes of the patients and families, and the plans for mortuary services, in a quiet and empathetic atmosphere. The appreciation, following the death, of the families, defines "a good death."

Elaine Vibrano, LVN

Ramona Manor Convalescent

Hemet, California

If a good death is understood to be the relinquishing of one's life with full awareness and acceptance, it is indeed a rarity, regardless of the setting. It is an ideal described by philosophers from Plato to Erikson to Kubier- Ross, for which one's whole life is the preparation, which is very difficult to attain.

In Adult Day Medical Services, "a good death" by this definition is not possible for those suffering from Alzheimer's disease or a related dementia because that self-awareness has evanesced with the progress of the illness. Death can come only as a relief to the caregivers who usually have grieved long before this for the loss of their loved ones' memories of self and family.

For the cognitively intact but physically compromised, death often sneaks up, taking us all by surprise. Their medical fragility is often very great; yet because the will to survive and enjoy life is equally significant, we are lulled into believing that each setback can be overcome. Still, we say goodbye to each other every day with, "I'll see you tomorrow, if nothing happens." We cover the bases.

Death is an old acquaintance of elderly people who have experienced it over and over again with family and friends. They are perhaps more willing than younger people to accept it for what it is - neither good nor bad - just inevitable. It is the caregivers who feel that it is somehow a failure of their will and the healing arts when death comes as it will - neither beautiful, nor embraced, nor even recognized.

Margaret Borders, RN, BSN1 BA

Nurse Manager, Queen Anne's County

Adult Day Medical Services

Crasonville, Maryland

The process of dying is a natural evolution of living. For my stuin Community Health Nursing, Hospice of Visiting Nurse Service has enhanced their understanding of how families approach end-of-life issues. One student had the opportunity recently to observe how one family participated in the dying process. The patient, who was enrolled in the Hospice Program, was near death. The family members, who lived approximately 30 miles away, were called back to the Hospice Center. My nursing student and her mentor were quite concerned that the patient would die before the family arrived. The student and mentor massaged the patient's back and held his hand until the family arrived. These nurses were able to comfort the family members by listening to them, by explaining the imminent death of their father, and by crying together. These words and gestures of comfort ensured that the patient and family participated in what some cultures call "a good death."

Karen A. Schwarz, PhD, RN

Assistant Professor, College of Nursing

The University of Akron

Akron, Ohio

In looking at death, there seems to be two opposing viewpoints: quality of life and quantity of life. The dying individuals' viewpoints and the people around them (e.g., families, significant others, caregivers) greatly influence whether or not the dying process is a positive one. It also influences decisions whether to aggressively treat the disease process or to provide only comfort measures.

The quality of life viewpoint looks at life as a pleasurable experience and wants to know what kind of quality of life will be the lot of dying individuals. Will they be able to be comfortable and free of pain? Can they do the things they wish? Have they any unfinished tasks or unresolved issues in their lives? If the answer to these questions is no, then someone with a quality of life viewpoint will look at death as a friend or a respite, a release from suffering and/or the negative aspects of the disease causing death. These people will generally choose palliative care rather than aggressive treatment when faced with a terminal illness or vegetative state. The death process, though sad, is usually a calmly accepted process.

The quantity of Ufe viewpoint looks at life as a precious commodity that has been given to them to treasure and support. To gain every minute of precious time, the activities of the body must be supported in any way possible to continue the beating of the heart and the breathing of the lungs. This viewpoint feels death is an enemy stealing precious time from the individual and must be fought with every weapon available in the medical arsenal. These people will generally choose aggressive treatment of the disease rather than palliative care when faced with a terminal illness or vegetative state. The death process is a war, and everyone involved feels the stress of the situation mentally, emotionally, and physically.

Neither point of view is particularly right or wrong but will make a tremendous difference on whether the death experience is "good" or "bad" for all involved. When faced with a terminal illness or an inevitable death, the quality of life viewpoint will make the process less traumatic and painful for all involved. It can be helpful to work with terminally ill individuals, their families, and those providing care so they can all work through the grief process and view this particular death from the quality of life side. The process of creating this change requires education about the disease, the selected treatment plan, the alternatives, and each of their consequences. It also involves emotional support and acceptance by those working with the individuals, their families, and the caregivers.

In creating this change, it is important for everyone to understand what palliative care means. To many, this term means that all treatment is stopped, and you "stand back and watch them die." However, palliative care means that everything possible is done to keep the dying individuals comfortable and at the highest level of functioning possible, but treatments designed to only prolong life are not used. What is or is not palliative care can vary depending on the individuals' needs and the disease processes that are causing death. It definitely includes good basic nursing care, such as bathing and personal hygiene, repositioning and exercise, pain control, and control of chronic and/or acute short-term (i.e., urinary tract infection, upper respiratory infection) conditions through medication. In some cases, it can also include suctioning, oxygen administration, intravenous fluids for hydration, radiation or chemotherapy to shrink tumors and relieve pressure and/or pain, and so forth. Comfort and maintaining the highest level of functioning possible are the goals of the treatment plan.

It is also important to address and attempt to bring closure to any unresolved issues that dying individuals might have. These issues are as varied as the individuals involved and will include the families' issues as well. They can be as simple as making a will and funeral arrangements to as complex as helping the dying individuals see and/or talk to estranged family members. These issues cannot always be completely resolved, but everyone feels more comfortable that an attempt has been made. Fewer regrets linger.

Knowledgeable, caring, and supportive caregivers are an important component in helping individuals and their families make the transition to accepting death. This means that the caregivers must have the same type of education and issue resolution that are given to the dying individuals. The attitude and support of those in constant contact with the dying individuals and their families will greatly influence how positive an experience the dying process is.

Changing the point of view of the dying individuals, their families, and/or the caregivers is not always successful. However, if the distress of the individuals involved is eased even a small portion, it is worth the effort expended.

Eve Reed-Lewis, RNC, BAH

Infection Control/Quality

Assurance) 'Inservice Education Coordinator

Anna Sunderman Homes

Seward, Nebraska

During my 1 8 years of working in a nursing home I have stood by a bed waiting...

Many times the residents have asked me, "Why doesn't God take me? Fm ready." Of course, my pat answer was a polite but firm response, "The time isn't right. When God wants you he'll take you. Nobody can second guess God."

Then a time came when I realized that God does not just take you, but he sends someone for you.

In this particular incident an elderly man was dying. The nursing staff had been standing by his bedside waiting. All the clinical signs were there, and the nurse said in a low tone, "It won't be long now." So we watched and waited several hours before his tired, frail body was hardly alive. She asked me to stay with him so he "wasn't alone."

As I stood there listening to his rapid shallow gasps of breaths, I took his cold, cyanotic hand in mine. After a few minutes, he raised his other arm and put out his hand, palm down, as if to take hold of another hand. He looked up and over his shoulder away from me, and his features became radiant with love. "I thought you would never come," he said. He closed his eyes and died. I could actually feel him dying. At first it scared me until I realized he had a good death. God had sent someone for him.

After that I changed my pat answer to, "When it's time, God will send someone for you. You won't be alone."

I would give anything to know who was in the room with us that afternoon. The one thing I remember was the fresh smell of spring soil and then a floral scent of roses. I cried.

Norma Chase, CSM

Care Staff Member/ Ward Clerk

Hearthstone

York, Nebraska

I have always been of the belief that there are some things worse than death. Having lost a sister when she was 3 years old and having watched her suffer and struggle all her life, it was a blessing when she passed. Now I watch my mother every day of her life take what looks like it may be her last breath. Every breath and every physical movement has become a tremendous effort and a struggle. I am again assured that life without any quality is a prison sentence. I have worked as a nurse for more than 30 years, and I have seen numerous patients suffer for long periods of time when death would have been a blessing. Death is as much a part of life as living. Humans after a while get tired of life and living. I also believe that one who is accepting of death has reached the highest level of life and has come to believe in an omnipotent being.

Rose Malpass, RN, BSN, MAEd

Staff Development

Britthaven of Kinston

Kinston, North Carolina

As a RN working in a skilled nursing facility, I have taken care of many dying patients. Though the patients have died from a variety of diseases, the most positive dying processes have occurred with cancer patients.

My experience also includes the death of my own mother and both of my husband's parents. More important, I am now caring for my own father who has lymphoma. Included here is what I have done and what I plan to do, taken from aspects I have learned as a nurse and family caregiver.

A positive process of dying occurs when patients have support from the families and/or significant others throughout the entire process. This includes the time of the initial diagnosis until death.

During this time frame, the physicians, patients, and families discuss what is currently happening and what the treatment options are. The patients can then decide which avenue to pursue. The families need to be supportive in the choices made - even if they are not in total agreement. This goes hand-in-hand with advanced directives. The advanced directive should be made so that when or if the patients are no longer able to make decisions, the families already know what the patients' wishes are and can carry out those wishes.

The families and/or significant others need to be involved in the patients' care, as much as they are capable of, throughout the entire process. This gives them the satisfaction of having done everything they could. Then there is no guilt or feelings of "I wish I had done..."

I also believe that at least one person should be at the bedside as death occurs. The presence of family members, a touch of their hands lets the patients know they are there and that they care.

My answer is a combination of the role of the nurse in explaining what the physicians said and what will occur, giving emotional support to the patients and families, explaining advanced directives and direct caregiving, and acting in the role of the daughter. You must learn that there comes a time when you let the hospital or hospice nurses take over more of the care and you concentrate on your own emotional state and just be there for your loved ones.

Deborah S. Medford, RNC

Staff Nurse

Shore Health System, Inc

Easton, Maryland

I like to think that when I die, my daughter and others I love will be there at my bedside. I would like all of us to grieve together. I would like all of us to forgive each other for past hurts, enjoy again past joys, relive successes, and marvel together at how we made it through hard times. I would like no one there to be fearful or burdened because of my death. I would like to know that people who love me will remember me with love but move on in their own Uves without guilt or sorrow. To me, this is "a good death."

In my 20 years of nursing, I have seen many good deaths. The ages and medical problems of the dying individuals varied, but there always seemed to be one common denominator - acceptance. The dying individuals accepted impending death, and loved ones, even as they grieved, allowed the dying individuals to speak freely about such painful topics as fears, the afterlife, pain, and funeral plans.

I think that nurses can assist dying individuals to reach this acceptance in several ways. We can encourage them to talk about their spiritual beliefs and continue rituals and practices that have comforted them in the past. We can encourage residents to mend rifts between themselves and loved ones. There is comfort even in reaching out to other people one last time - even if they do not respond. Whenever possible, we can assist residents to do those things they always wanted to do but never did. It is easier to let go of Ufe when it is full and rich and there is no "unfinished business."

Cheryl Lawrence, RN

RN Inservice Director

Springfield Health and Rehabilitation Center

Springfield, Vermont

A positive process of dying occurs when people who are dying have made peace with their God and loved ones. This can occur at home, in a hospital, in a hospice unit, or in a nursing home. When there is support and love from the loved ones, the dying individuals are more comfortable. Sometimes dying individuals will hang on until loved ones from far away arrive. Usually, the individuals seem to want to say goodbye, even if they cannot speak.

If there are unresolved conflicts either within the dying individuals or in the famiUes, the dying process seems harder and more prolonged.

Different cultures have differing ideas of what happens at the time of death. The staff needs to respect the cultural traditions of the families. People from some cultures need to have open displays of grief, while others need to grieve alone. Some are not able to display their grief even to their dying loved ones. There is no right or wrong, only what is appropriate for the individuals.

A very close friend recently died of cancer after a long hard battle. He lived longer than any of us thought he would. He fought to remain aUve throughout the birth and baptism of his grandson and his 56th birthday. The next day, when he was ready to die, he asked to go into the hospice inpatient unit, and he died peacefully with his family and loved ones surrounding him. He was able to say goodbye to all his loved ones one more time and died with his wife, daughter, and son-in-law near him, while the new baby slept peacefully beside the bed.

Marsha Barry, RNC, DON

Cook Health Care

Youngtown, Arizona

A positi ve process of dying is evidenced when the faces of the deceased appear "calm" after death. The families and patients had accepted death and all of the "unfinished business" was taken care of before the end. Patients have gone through the different stages of dying and are at peace with themselves and state that they are ready for "the journey." Many patients express the fear of dying alone. Families, friends, and nurses are encouraged to be present when the end comes and to celebrate the patients' passing. The majority of dying patients seem to focus on "the light" a few hours before death and have smiles or peaceful looks on their faces until the end.

Gwendolyn Arias, RN, BSN, CG

Staff Nurse RPN III

HiIo Medical Center

Extended Care Unit

Hilo, Hawaii

A positive process of dying is one in which the dying individuals and all involved are free of pain and discomfort, mentally and physically; free of guilt and denial; and accepting of death as a stage of the life process.

"A good death" is to see a husband holding the hand of his dying wife after more than 50 years of marriage. Tears streaming down his cheeks, while he gently tells her how beautiful she is and professes his lasting love for her. Children gathered at the side of quiet, a peaceful aging face. The love can be felt in the room. This portrays a "good death." Dying individuals accepting death with dignity, allowing their bodies to surrender without a need to struggle, satisfied with the experiences of life - this is another positive image of dying.

Death arrives; whether we accept it or deny it, death persists. The living must survive, gain strength from the loss, and add to the concept of a positive process of dying.

Sandra P. BI uhm, RNC, BSN

Staff & Charge Nurse

Holly Manor Nursing Center

Mendham, New Jersey

As a RN beginning my 40th year in nursing, I have been privileged to spend the final hours and moments with hundreds of dying men, women, and children.

I remember the hot summer night, 1958 in Buffalo, New York, as a student nurse on the night shift. The tiny 9-year-old boy dying of renal tuberculosis told me, "I'm going to die, but Daddy says he'll be here when God brings my new body." I assured him that was true, and I prayed his was "a good death."

Twenty years later I listened as a 29-year-old mother, dying of cancer, agonized over, "My children won't even remember me." I tried to assure her that her loved ones would keep her memory aUve, and I prayed hers was "a good death."

Years later, there was an 88-yearold woman who wondered if she could be held and rocked until she died - and she was.

Just 3 years ago, a 64-year-old minister told me, "The journey is so easy if you just let it happen," as I sang his favorite hymn for him. I hope his was "a good death."

Each time I am permitted to be a part of my patients' journeys to death, I am awed anew. In what other career does one experience such intimacy? The wonder of it all never ceases to amaze me.

Marlene N. Lacy, RNC

Nurse Consultant, Healthcare of Iowa

Cedar Rapids, Iowa

Certainly, individuals and families must be able to preserve their experience of wholeness throughout the dying process. Those who have lived surrounded by family, friends, or both should be able to have those dear people near them as they prepare to die. The same holds true for favorite possessions and activities. Because death is a part of life, although certain concessions might need to be made to assist the individuals through the dying process, death and dying should be approached with the same sense of wholeness that life and living was approached by the individuals.

I have a great deal of experience in both acute and long-term care. No matter what the setting, I have found that hope is an important element in the process of dying. According to Robert Frost, "Hope doesn't Ue in a way out, but in a way through." Hope in dying can mean the hope of a pain-free day, the hope of a visit from a cherished grandchild, the hope of attending a long anticipated concert, or the hope of hearing a taping of that concert. Sensitive nurses can find many ways to offer hope as that way through the dying process and make the process a positive experience. Although some ways of providing hope may seem odd or unusual, they are appropriate if they fit the dying individuals and their sense of wholeness.

I recently cared for a dear, petite woman who was put on puddingconsistency liquids and pureed foods because of silent aspiration. She requested regular foods and liquids, stating she would rather die from aspirating than "live" eating and drinking what she considered disgusting. She was already in a serious state of decline from endstage Parkinson's disease. The nursing staff advocated for this woman. After carefully explaining the risks of her choice to eat and drink regular foods and liquids, we asked the doctor to honor her wishes for a regular diet. She never stopped smiling about the change in her diet. I feel she was able to continue her life, limited in expectancy though it was, with hope and wholeness, eating and drinking with pleasure.

Do not forget the role of faith in the positive dying process. Those individuals who see death as "perfect healing" approach the experience with hope and a sense of wholeness. So often nurses ignore this crucial part of the dying individuals' lives, so it is certainly crucial to their dying.

So Ann Hart, RN, BSN

Director of Nursing

The Glen at Willow Valley

Lancaster, Pennsylvania

This question was submitted by Christine Kovach, PhD, RN, Associate Professor, Marquette University College of Nursing, Milwaukee, Wisconsin. Her commentary follows:

The contributors' comments demonstrate an abiding concern for assisting patients and families in a positive process of dying. They also underscore how nursing care must be individualized, based on each patient's needs and values. We live in a society that has a tremendous fear of death and that has largely marginalized and institutionalized death experiences. Most deaths occur in hospitals and. long-term care facilities. This segregation of the dying experience from mainstream American culture has helped to perpetuate death anxiety, denial of death, and efforts to avoid what is a natural and inevitable part of the human condition.

Hospitals and long-term care facilities are designed to operate efficiently. Day-to-day activities are organized around essential tasks that lead to specific outcomes. These outcomes are often curative - to rid the body of infection, heal the skin ulcer, bring the body back to a state of physiological homeostasis. In this curative scenario, however, patients who have palUative care needs are often given secondary status.

Hospital nurses work in a culture designed and organized to prevent death. In this atmosphere, nurses must find ways to provide palliative care to dying individuals. People who are dying require unique services that are different from, but just as sophisticated as, the technological interventions so often used to cure diseases.

Nurses in acute care seem to be bombarded with two-dimensional critical pathways. The fundamental flaw of these tools, of course, is that people are not two-dimensional. When a person is dying, this linear, mechanistic way of thinking and behaving is not only flawed but is the antithesis of the dying person's experience and needs. Efficiency and palliative care should not be viewed as a dichotomy. Rather, we need practice models that consider the cultural, social, spiritual, legal, physical, and psychological aspects of the journey to death.

Long-term care nurses should be leaders and experts in palliative care. Nurses need to clearly identify whether the goal for the patient is cure, maintenance, rehabilitation, or palliation, and alter their intervention strategies accordingly. Regulation and reimbursement issues in long-term care can be viewed as impediments to providing holistic and context-driven palliative care interventions. The alternative approach is to partner and dialogue with regulators and policy makers to encourage innovation and to create a health care environment in which nurses, rather than outsiders, define the scope and standards of nursing practice.

Nurses possess knowledge of interventions that facilitates a positive process of dying. Palliative care does not mean little or no interventions. Each contributor to this Your Turn column has, in a sense, invited nurses to join in developing a higher level of services and responses to the human encounter with death.

10.3928/0098-9134-19980701-10

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