One the most important methods of offering support to families (and others) during dying is coaching. Coaching involves a process of sharing knowledge and working with families as they practice new skills in a supportive environment. Coaching of families should parallel changes in the dying person. Changes are explained, and suggestions are made for how the families can adjust to them. I believe that such coaching allows families to better participate in the care of the dying, promotes comfort and peace for the dying, and helps families with their grief, which is transitioning from anticipatory grief to bereavement.
We can explain that the dying tend let go of senses and desires in a certain order (with variations, of course, depending on the individual). First hunger and then thirst are lost. These losses usually precede the last 48 hours, and coaching is therefore also appropriate at earlier stages. Speech is lost next, followed by vision. The last senses to go are usually hearing and touch.
Families tend to frame their understanding of the loss of these senses and appetites in negative ways: "Look, she is starving to death." It may help to reframe the loss in more positive terms: "We don't really know why hunger and thirst are lost as they tend to be. One way to think about it is that she (the dying person) must let go of many everyday things in dying. People don't do this all at once. It is sad, but it is better than dying hungry or thirsty."
In addition to worrying about the dying person, family members are also grieving their own losses. Each of these losses of the senses and desires in the dying patient tends to be mirrored by losses in family members. Much of what seems to motivate families' concerns arises from this grief. For example, a loss of appetite and thirst in the patient tends to be mirrored by a grief reaction related to nurturing: "If I cannot feed or give fluids to my dying loved one, how can I nurture him?" We may explain the loss of appetite to families, but if they hear that we are saying they should not nurture the patient, they will rightfully reject our counsel. The question then becomes how can nurturing be transformed so that it will meet the needs of the family and be appreciated by the patient. Instructing the family that moistening the mouth or giving small sips of a cool liquid may be more appreciated by the patient than a large meal may help.
When speech is lost, otherwise alert patients may become frustrated by the inability to speak. Reassuring them that we understand their frustration and rewording our inquiries so they can be responded to with head nods or shakes (yes or no) can facilitate communication and reassure the dying. Families may need to be coached in these techniques. For families the loss of speech in the patient is mirrored by an inability to communicate in the usual way. What was for most families a two-way conversation becomes a one-way conversation, at least verbally. This, too, gives rise to grief: "How do I know what she is thinking or feeling?" Note that this question anticipates a much larger question for family members at this transition stage. What, if anything, will she experience when she is dead, and what will my relationship be to her? Families may think that patients who are unable to speak are unable to communicate, listen, or even be conscious. It is important to explain to them that many such patients can still respond and communicate nonverbally. At this stage we suggest that family members talk to the dying person in a peaceful, reassuring manner. I truly believe this helps most dying people, and most families have something important to say to the dying, such as "I love you."
I discussed my experience of "pronouncing" my own father's death in a nursing home in Chapter 8. His death occurred before I had become involved in palliative care. The night before he died I rushed across the country to see him. I entered his room, alone, as the doctor-son. He was breathing very rapidly, reflecting, I thought with my doctor's mind, some metabolic acidosis with a compensatory respiratory alkalosis. "Probably septic," I thought. His face appeared relaxed. I confirmed that he had received some morphine, and then I left. I saw him briefly the next day before he died. I deeply regret that I did not sit down and tell him what was in my heart. Whether he would have heard me I do not know. I do know that doing so would have been good for me. What I needed was a coach to explain that he might be able to hear and to suggest that perhaps I sit with him, hold his hand, and talk with him. I needed permission to be a son saying goodbye to his father.
Some people, although not many, will ask what to say. I tend to answer, "What is in your heart," although a custom is emerging that there are certain parting words that should be spoken. Byock cites from a hospice nurse five "tasks" that may serve as parting words (although these tasks may better serve as a process among the dying, family, and friends at an earlier stage). These tasks are to ask forgiveness, to forgive, to say thank you, to say I love you, and to say goodbye.11 These parting words may be shared in a two-way discussion or may form a starting point for families to speak to a dying patient at an advanced stage. It is important not to impose these tasks on patients or families, but they may be helpful for those searching for a starting point. I believe that these tasks may be carried out nonverbally as well as verbally.
There may be a brief stage in which the process of losing vision is troublesome to families. Patients may appear to be "looking right through you." This often feels spooky to families. The "look," as some hospice workers call it, is often accompanied by predeath visions. Patients at this stage may be on a different wavelength, as discussed in the section on altered states in Chapter 7. Families may project all sorts of meanings onto this look - "He's ignoring me or mad at me." It may help to explain this process (without necessarily trying to explain why, in fact, patients experience different wavelengths).
Most dying people then close their eyes and appear to be asleep. From this point on dying is very mysterious, and we can only infer what is actually happening. My impression is that this is not coma, a state of unconsciousness, as many families and clinicians think, but something like a dream state. Hearing and touch often seem remarkably preserved, suggesting some degree of consciousness. If people ask me how I know this, it is from the many cases in which a loved one, holding a dying person's hand, has said "I love you" and received a soft hand squeeze. In reassuring a dying person who has anxious respirations by saying "You are doing fine," the breathing pattern may slow and becomes peaceful. Families are thus encouraged to comfort their loved one with words and touch.
Clinicians may need to give family members permission to take a break from this final vigil. Some family members desperately perform a "death watch," believing it is critical to be present at the time of death. They may push themselves so hard that they threaten their own health. Basic needs such as eating and sleeping for those doing a vigil must be met. One may suggest that family members take turns. Because there is no way of knowing exactly when someone may die, it may be necessary to acknowledge that the patient might die during such a break. (Often such deaths are later interpreted in a positive light: "Joe was just waiting for me to leave in order to die. It was too hard with me there.") Most realize at some level that death has its own timetable. It may be helpful to suggest that as important as physical presence is and that being present at the moment of death is a great gift, love is not bound by time or space. Such coaching may also help survivors in bereavement, when the relationship with the deceased will not depend on physicality.
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Palliative Care Perspectives
James L. Hallenbeck, M.D.
Copyright © 2003 by Oxford University Press, Inc.
The online version of this book is used with permission of the publisher and author on web sites affiliated with the Inter-Institutional Collaborating Network on End-of-life Care (IICN), sponsored by Growth House, Inc.