Journal of Gerontological Nursing

FAMILIES AND END-OF-LIFE CARE: How Do We Meet Their Needs?

Suzanne K Goetschius, RNCS, MS, GNP

Abstract

I'm sorry. There is nothing more we can do for her. It is only a matter of time now. "

These hopeless words can send a family into crisis. Suddenly they are face to face with the impending death of a loved one. The family may have been anticipating this event over the course of a terminal or chronic illness. They may be facing this moment as the result of a decision to no longer aggressively treat a problem. Or, this could be the result of a devastating acute process. Sometimes, the family may be fortunate enough to have the time to slowly process their impending loss. In other cases families may experience end-of-life care suddenly, in a strange setting with unfamiliar providers. Their nurse may be the person best able to help them cope with this unfamiliar and unknown process. Yet for many nurses, this is also a stressful time. Just what can you do for families when, "there is nothing more we can do"? How can we as nurses best deal with the families of imminently dying patients and the needs of both? What are the needs of families in end-of-life care situations, especially when there is no luxury of time? Using two case studies from my practice, I hope to provide you with some tools for dealing with these challenging circumstances.

An elderly woman was brought into the hospital with an extreme exacerbation of her terminal COPD. After trying oxygen, bronchodilators and steroids, the doctor carefully explained that the next step for her was intubation and a ventilator and that without it, she would most likely die. He also explained that once on the ventilator; she might not successfully wean. After being evaluated and learning of the gravity of her current state, she asked to have no more medical interventions and allow "nature to take its course."

She and her family had discussed this possibility in the past and she had stated her wishes to them. She had a completed living will and a durable power of attorney for health care (DPOA-HC) on record. Her living will stated that she wanted no extraordinary means used to keep her alive. Her DPOA-HC listed her daughter as her agent.

The doctors and nursing staff supported her decision and marveled at her matter-of-fact manner and her family's calm acceptance at this time. She asked to have a vodka martini which her family got for her and she enjoyed immensely. A morphine drip was started to decrease the patient's sense of air hunger. The patient became less restless and was able to fall asleep comfortably. Her daughters left for home. The patient was checked on frequently throughout the night. She did not appear to be in any distress and offered no complaints when questioned.

The next evening, the unit was in an uproar over this patient and her family. When the family had arrived that morning, they became upset and angry with the medical student who briefed them on her status. He reported that they had become very upset when he told them she was still alive but comfortable and in no distress. They demanded to know why she was not yet dead. The medical student was unsure what to say and had attempted again to explain that she was in no distress, on a morphine drip, arousable to voice but minimally responsive. He left and came back to speak with the family with his resident who reaffirmed the medical student's assessment.

Her family spent the rest of the day with alternating family members at the bedside. They questioned the nurse…

I'm sorry. There is nothing more we can do for her. It is only a matter of time now. "

These hopeless words can send a family into crisis. Suddenly they are face to face with the impending death of a loved one. The family may have been anticipating this event over the course of a terminal or chronic illness. They may be facing this moment as the result of a decision to no longer aggressively treat a problem. Or, this could be the result of a devastating acute process. Sometimes, the family may be fortunate enough to have the time to slowly process their impending loss. In other cases families may experience end-of-life care suddenly, in a strange setting with unfamiliar providers. Their nurse may be the person best able to help them cope with this unfamiliar and unknown process. Yet for many nurses, this is also a stressful time. Just what can you do for families when, "there is nothing more we can do"? How can we as nurses best deal with the families of imminently dying patients and the needs of both? What are the needs of families in end-of-life care situations, especially when there is no luxury of time? Using two case studies from my practice, I hope to provide you with some tools for dealing with these challenging circumstances.

An elderly woman was brought into the hospital with an extreme exacerbation of her terminal COPD. After trying oxygen, bronchodilators and steroids, the doctor carefully explained that the next step for her was intubation and a ventilator and that without it, she would most likely die. He also explained that once on the ventilator; she might not successfully wean. After being evaluated and learning of the gravity of her current state, she asked to have no more medical interventions and allow "nature to take its course."

She and her family had discussed this possibility in the past and she had stated her wishes to them. She had a completed living will and a durable power of attorney for health care (DPOA-HC) on record. Her living will stated that she wanted no extraordinary means used to keep her alive. Her DPOA-HC listed her daughter as her agent.

The doctors and nursing staff supported her decision and marveled at her matter-of-fact manner and her family's calm acceptance at this time. She asked to have a vodka martini which her family got for her and she enjoyed immensely. A morphine drip was started to decrease the patient's sense of air hunger. The patient became less restless and was able to fall asleep comfortably. Her daughters left for home. The patient was checked on frequently throughout the night. She did not appear to be in any distress and offered no complaints when questioned.

The next evening, the unit was in an uproar over this patient and her family. When the family had arrived that morning, they became upset and angry with the medical student who briefed them on her status. He reported that they had become very upset when he told them she was still alive but comfortable and in no distress. They demanded to know why she was not yet dead. The medical student was unsure what to say and had attempted again to explain that she was in no distress, on a morphine drip, arousable to voice but minimally responsive. He left and came back to speak with the family with his resident who reaffirmed the medical student's assessment.

Her family spent the rest of the day with alternating family members at the bedside. They questioned the nurse about each activity she undertook with the patient and she explained repeatedly that her goal was only to keep their mother comfortable. The nurse pointed out that the patient's respirations were unlabored, that she was quiet and seemed comfortable. Throughout the day, the patient became less and less responsive.

As the evening charge nurse I began my rounds on the unit. The nurse who was now caring for the patient came to me very upset. The family had again questioned why the patient was still alive. She had tried to explain what was happening to their mother. They asked her point blank why she would not give her enough mo^hine now to end her life. After all, they reasoned, this is what she wanted. I went to the room and asked the family to come with me to a private setting where we could talk. I asked the nurse caring for the patient to join us. Clearly we had missed some vital information when we initially assessed this family's calm acceptance of the decision to provide comfort care. In meeting with the family, I hoped to gather more data and reassess our plan of care.

The family's body language was angry with arms folded across chests and stern expressions. I invited them to tell me what was happening with their mother's care. They came quickly to the point. The family felt that we were not implementing their mother's living will. They believed we were "keeping her alive." Specifically, they believed we were not living up to the terms of her living will because we were not giving her enough morphine to stop her breathing. The daughter who was the DPOA-HC for her mother identified herself and said she was acting for her mother and wanted this done immediately. I must admit I was quite shocked at first when I realized what they were asking us to do. Apparently the family's interpretation of the living will and DPOA-HC was different from ours.

I started the discussion by acknowledging how difficult it must be to see their mother linger on when all involved agreed that it was "her time." We reviewed the content of the living will and the role of the DPOA-HC. I pointed out that their mother was not being kept alive by any means that we had the legal or moral means to control at this point. We discussed for some time the role of the morphine drip in mamtaining her comfort, including the option of increasing the dose if she were, in any way, uncomfortable. They acknowledged that at this point she was unresponsive and did not seem to be in any distress.

The DPOA-HC reiterated that it was their wish that she die with dignity according to the terms of her living will - with no extraordinary means being used to prolong her life. "If you are unwilling to fulfill her wishes then maybe one of us is going to have to do it," said one of the daughters. Reinforcing again that we were doing nothing at this time to keep her alive, I reiterated our rationale for our actions. First, we were providing only comfort measures. I was concerned that perhaps they did not fully comprehend what they were implying. Carefully, I pointed out that anything further would be an active step toward ending her life and this was something we could not and would not legally or morally do.

They looked from me to the nurse caring for the patient and asked her directly to give their mother enough morphine to stop her breathing. The nurse declined and said while she would work actively to keep their mother comfortable she would not actively end her life. The family was frustrated and upset with us. We discussed the implications of the living will and I tried to educate them about what it said. Her living will only directed us what care not to give - it did not suggest that she wished us to actively end her life. Our difference appeared to be differentiating between prolonging life and hastening death.

This was an unusual variation of an all too common situation: a family's knowledge deficit about endof-life care. A nurse's first action in dealing with families of dying patients should be to assess the family's knowledge and expectations about dying and end-of-life care. Educational goals could include helping families to identify and cope with their feelings about "letting go," forgoing extraordinary means such as ventilators and artificial nutrition and accepting comfort measures such as morphine drips. These choices are difficult for families. Dr. Peter G.S. Günther, Associate Professor of Medicine, University of Vermont and Clinical Leader, Primary Care Internal Medicine Health Care Service, Fletcher Allen Health Care, has used the distinction between "prolonging life" and "prolonging death" in counseling families who are making choices about end-oflife care. In a case where there is no hope of recovery, family members may be more comfortable deciding on interventions for a family member when they ask the question: are we prolonging life or only prolonging death? Often we are not prolonging life, but only prolonging death when we intervene with feeding tubes, antibiotics or ventilators. Use of this distinction may help families to make difficult decisions about end-of-life care.

Here, I was asking a family to accept that the rationale for our actions was shaped by the terms of the patient's living will and a legal and moral code that says that we, as nurses, will not actively seek to end a patient's life. While we were not actively seeking to prolong life, we would not seek to hasten death. As nurses, we believed this was an adequate rationale for our plan of care but our rationale left this family feeling that their loved one's care was inadequate.

This was also not the first time that a family's expectation of how death should proceed differed from the reality. With the advent of the Patient Self-Determination Act (PSDA) in 1990 and the use of advance directives (AD), families and patients are finding themselves in the situation of having to face what, until now, has only been an abstract concept: My loved one will die while 1 stand by and watch. The PSDA and ADs have given families the peace of mind of knowing that their loved one's wishes are communicated and taking the burden of decision-making in end-of-life care away. It does not however, change the difficult process of watching someone die.

Nurses play an important role in preparing families for death situations and developing interventions to meet the needs of these patients and their families. Hospice programs do this in situations where there is often adequate time to educate and prepare the family. Those of us practicing in other settings must begin to develop strategies for situations that can arise in a matter of hours, in a strange and stressful environment with people the family may have just met. Nurses in acute and long-term care must be as well schooled in the appropriate interventions for end-of-life care as our colleagues in hospice nursing.

Often, in end-of-life care situations we focus on what we are not doing instead of the things we are actively doing. In our discussions with families we point out all the things we won't do: won't intubate, won't do CPR, won't defibrillate. Perhaps, by starting from this focus, we give families (and ourselves) the sense that we won't do anything. Families might be more comforted by discussions of what we will do: we will maintain a pain free state, we will offer frequent mouth and skin care, we will offer you privacy, we will offer you support - both spiritual and professional and we will tell you, to the best of our ability what is going to happen.

This is not a time to "pull back" from families but to assess their knowledge and abilities, develop interventions to help them cope with their feelings and identify how they want to be involved in the end-oflife process. Our role is to then facilitate this process. There are four steps to accomplishing this. First, as noted above, the nurse should not pull back but find a way to be "present" for the family and the patient. As nurses we often struggle with our own feelings in terminal care settings based on our beliefs, our personal experiences with death and our professional experiences with death. Cutillo-Schmitter (1996) notes, "...nurses dealing with patients in situations where cure is not possible must work through personal feelings, grief experiences and vulnerability in order to see and intervene more effectively in another's loss."

Nurses must recognize that the situation is what it is: the impending death of a loved one. We are not trying to change this outcome but to assist those involved in the process by caring. The nurse can begin by acknowledging how difficult a situation this is, listening to the stories and reinforcing the value of the family's presence alone for their family member. As death approaches, families are often overwhelmed by the sense of relief that it will soon be over and then experience guilt that they feel this way. Validating that this is a common feeling for many people who have watched a loved one die may bring great comfort to some family members.

Another common feeling for families today is the sense of failure if a loved one does not die at home. I find this startlingly similar to the guilt women felt if they did not have "natural childbirth" a decade or so ago when natural childbirth was seen as the gold standard for birth. While the outcome was the same, women somehow felt that they had been deficient if they needed pain medication or had a cesarean section. I have seen this attitude change over the past decade or so and hope that we do not make a similar error at the other end of the life spectrum. I see a theme in today's literature that the only "good" death is one that takes place at home or in a hospice type setting. While there may be some for whom this is the best choice, it is not the "best" solution for all. We must be careful not to apply a value judgment to a situation already fraught with implications for family members.

Second, assess what families know about the death process. Have they been through this process with another family member or friend? Were there concerns with the last experience that they need to resolve? Is this the first time they have experienced death? For many persons, death is an abstract concept based on what they have seen in the movies, television and the media. For the most part, death does not look like it does on television and a movie does not accurately portray the sounds, smells and sensation of death. Many families have told me it is the uncertainty of what death looks like that scares them the most. As the first case report illustrates, a family's perception of how long death takes is often the cause of much anxiety. Most of us have lived in times when deaths occurred far removed from us and the average person has not had the opportunity to see death up close. Our experience with death as nurses can be used to allay these fears of the unknown.

Third, help family members to identify a role or activity for themselves in this process and provide them with support, oprxjrtunity and positive feedback for their role. Often, in the acute care setting, there are many health care personnel around to accomplish tasks that would have been the responsibility of family members at home. Assess whether they would like to provide these services for their loved one now. For some, it may be frightening to see a loved one debilitated or laboring to breathe. Stay with the family member during those times and help them examine their fears and concerns.

Fourth, give as much information as is realistically possible about what will happen when their loved one dies. Depending on the underlying disease process, this will vary. Be careful about offering predictions about time - they are often wrong. Couch information carefully in the reality of the situation. I can't be sure but I notice he's having longer periods of apnea now which often means that the end may be approaching" or "I notice his fingers are looking mottled which may mean it will be soon." I try to honestly tell people what I see when I assess the patient, what it means and how I expect it to change over time. As they watch, they learn and can begin to assess the changes for themselves. If the process is overwhelming for family members, encourage them to take breaks outside the room and come back when they are ready.

The following anecdote illustrates how this process can be used to develop useful interventions in endof-life care. A gentleman who had been a frequent patient on our unit was transferred back to us after a stay in the ICU. It had been decided that, "there was nothing left to offer" him and he had decided, along with his family (a wife and children from his first marriage) to forgo further interventions and be allowed to die. The extended family had been staying in the room now that Fred, the patient, was out of ICU. I knew the patient, daughters and wife (Mary) fairly well from previous admissions, but the number of other people in the room was amazing. There were literally rows of seats with people in them. I asked the wife and daughters to step outside and asked how they were doing with this situation. Were they comfortable with all these people there? While the daughters said yes, Mary seemed hesitant but agreed.

Through the evening, I talked about the process that would unfold over the next 24 to 48 hours. At this point, "Fred" was getting doses of IV push morphine as needed. The family did not want him to have a morphine drip though we offered and explained why it might be a good choice. As the evening wore on, Mary seemed to be moving farther and farther away from Fred's bed. There was much talking in the room between the various members of Fred's family and food was brought in. Soon I found Mary sitting at the door looking longingly at the bed with her husband in it but seemingly afraid to get any closer. I asked her to step outside with me to find out how she was doing. Tears came quickly. She was worried about his comfort, about what would happen next, about saying good-bye. I asked again about the crowd and she replied that they were his family and she could not ask them to leave, besides, most would be going home for the night soon.

When it began to get late in the shift, I asked the family to step out so I could finish getting Fred comfortable for the night. Most agreed that it would be a good time to head home. I asked Mary to join me in caring for Fred. I asked her if she would like to do some of the care, offered her a washcloth and watched for a moment to assess her comfort. I told her I needed to go get some linen and asked if she was comfortable alone. She said yes and I left the room. Once outside, I asked the family not to go back in the room until I returned to give them some privacy. After a long leisurely walk to the clean linen and back, I knocked softly and entered the room. Fred's eyes were open and he and Mary were holding hands quietly. Mary smiled and said that they were through with the bath and asked me to give Fred something to make him more comfortable.

When most of the family left and Fred was medicated for comfort, I spoke again with Mary and the daughters and described what might happen. I pointed out how he was less and less alert and how his respirations took more effort. I talked about how his urine output may drop off and his fingers and toes become more mottled. These would be signs that the end was approaching. They were tearful but thanked me and settled in for the night.

When I arrived at 0700, Fred was clearly dying. His breathing was erratic and very labored, his fingers were cyanotic and he had no urine output. Mary seemed frightened and was again standing at the doorway. She told me that she thought Fred was struggling and seemed uncomfortable. Back in the room, I assessed Fred and spoke with Mary and the daughters. I told them what I saw and what I thought it meant. They began to cry softly and told their other family members. Pointing out that Fred could still hear them I suggested that they had the opportunity here to tell him all the things they needed to say goodbye. I also asked them to consider telling Fred that it was okay to go, if they felt this way since he seemed to be working so hard at this point. I asked again about the morphine drip and pointed out that it would help him to not work so hard and they agreed.

Family members were taking turns sitting at Fred's side and speaking quietly to him. His best friend was standing at his head, brushing his hair away from his temples and telling him that it was okay to go. He repeated again and again that he would look out for Mary and the girls. Fred would occasionally open his eyes but only for a moment. As the morning passed, he began to have increased periods of apnea and I spoke again to the family about what this meant. Fred's friend continued his vigilance at Fred's side and encouraged the daughters and wife to sit with him. He spoke in Fred's ear for the most part but could occasionally be heard to say "it's all right buddy, you can go." At one point, he looked up and laughed, "I bet he's just staying here to prove he's just as stubborn as he ever was." They all laughed and seemed to relax a bit and the tears they shed were accompanied by smiles.

Slowly, Fred's periods of apnea increased. At this point I stayed in a corner of the room. With each long pause, the family would collectively hold their bream and then breathe again with his next bream. Finally, Fred took no more breaths. I walked over and listened to Fred's chest a moment. When I stood up, they all began to cry. I explained to Mary that the next step was for a doctor to come see Fred. She was tearful but smiled, "he's at peace now." After the doctor saw Fred and spoke with the family, I came back to the room and told them what a wonderful thing they had done for Fred. They smiled and talked about their memories of the morning. They discussed the changes they had seen and how they knew what it meant. They noted his increased level of comfort on the mo^hine drip. Several of them mentioned being able to "say their good-byes." They thanked me for being with them and left. Later Mary returned with a large plant that she gave to me with an even larger hug. "You know why," was all she said.

This scenario illustrates how well end-of-life care for families can be implemented. There was a presence the family could turn to, they were educated whenever possible about interventions that might help Fred like the morphine drip, Mary was given opportunity and support for her role in the process and, finally, I tried to give them as much information as I had about the process Fred was undergoing.

The first scenario clearly shows what can go wrong. The family did not seem to understand our reasoning in refusing their request. In retrospect, our error was probably in not assessing this family carefully at the outset. We assumed that since they all seemed to agree with their mother's decision that they all understood the implications of that decision. Perhaps if we had talked with them that first evening and discussed the likely flow of events leading to their mother's death, they might have had more realistic expectations of the process. How did it end?

Around 9 PM the family decided to leave for the evening. The nurse promised to call if there were any changes. Within the hour, the patient died. The family returned and entered the room. After looking at their mother, the DPOA-HC turned to the nurse and said, "please tell me you did this - with the morphine." The nurse replied that she had not, that she had simply died. "I didn't think you would," said the daughter. The nurse invited them to stay as long as they wanted. I stopped in to offer my sympathy which they accepted graciously. The family sat around the bed for a while talking and then left.

I often wonder how it will be for their next family death. Will they have learned something from this experience that will help them in the next situation? Will the next nurse they come in contact with assess them better and intervene more appropriately? I know that I will always remember to explain the mysterious process of death as best as I am able no matter how ready a patient and family seem.

Despite how much is written, acted out or discussed, the process of death is still new and unfamiliar to most families. In order to better provide care for dying patients and their families, nurses need to experience end-of-life care in a variety of settings in their basic educational preparation and become comfortable with assessment and intervention in these situations. We must step up in the situations where advance directives and living wills are being implemented and accurately assess family's and patient's understanding of their meanings. We must advocate for adherence to the wishes of the patient and educate ourselves and others to best provide this special type of care.

REFERENCES

  • Cutillo-Schmitter, T.A. (1996). Managing ambiguous loss in dementia and terminal illness. Journal of Gerontological Nursing, 22(5), 32-39.

10.3928/0098-9134-19970301-15

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