6
FAMILY AND FRIENDS

Often, in the physician’s office, a patient who is in great need of help protests, “I could not ask my neighbor/friend/family to do that!” People in our society often seem reluctant to ask for needed help, yet doing so will often get the desired assistance and, additionally, will reward the person offering help. Friends and family like to be asked to help in difficult situations since it makes them feel as if they are doing something constructive. If excluded from helping, they can feel emotionally and psychologically out of the loop, and, when the patient has died, will have greater difficulty coping with the aftermath than if they had been allowed to participate in the process. This is a time to tell friends and family how they could be of assistance, and you should not feel “I’m just being a burden.” Doing this is comforting for both of you, and not only will you feel less isolated, your friends and family will feel less helpless.

THE VALUE OF ALLOWING HELP TO BE GIVEN AT THE END

The terminal phase of life can be extremely important emotionally for patients, family, and friends. Sometimes the patient feels that the very last few weeks are best skipped and death should be hastened, but more frequently the very end can be incredibly important and poignant. My friend, Charles Baron, a professor of law at Boston College and an authority on the legal aspects of the end of life, told me of the death of his first wife.

“Her name was Irma. Yes, you can use her name and refer to her specifically. It would be a way of honoring her memory.

“She and I had known each other since fifth grade. We started dating at age fifteen. What a wonderful person! She grew up in the 1950s, graduated from college, and was one of that transition generation of women. When the kids got older, she started working part-time and then full-time, but always saw herself as a nurturer—principally wife and mother. Irma was just, competent, intelligent. She poured it all into taking care of us. Did a great job.

“Irma was sick for eight years. After the breast cancer diagnosis was made, she had a mastectomy and prophylactic chemotherapy. Four years later, the cancer came back, and she developed metastases to other areas. We knew unless some incredible breakthrough happened, she would soon be terminal, but Irma fought bravely at every turn and soldiered on through everything—and we tried it all.

“We did our last family trip to western Massachusetts, and it was very tough for her. She became bedridden. She had been fighting it all along, but now was an ill person, labeled as such in her mind. Irma felt as if she had gone from a healthy nurturer who was fighting cancer to a sick person who was dying and was dependent on others. She became very despondent, and we really had to work, the three kids and I, to convince her she was not a burden at all. It was the opposite. In a horrible way it was a gift in that we were honored to have this small opportunity to give back to her what she had done for us. For the remaining couple of months, it was an intimate time, a resumption of an intimacy we had not had in a long time, a way to communicate with one another, including the kids. The five of us were brought close together, and we felt wonderful about caring for her at home.

“In addition to hospice care, Irma was also under the care of friends and neighbors. A number of people were involved in caring for her when I was at the office. I think of one neighbor around the corner in particular. We hadn’t been that close, and she came over to the house the first time to volunteer. I remember her frozen in the dining room, afraid to go upstairs to deal with Irma. We talked, and then she went upstairs and of course did beautifully—and kept coming back. Ever since, whenever we see each other, it’s like an old buddy from a foxhole. We feel so close.

“There did come a point when Irma could have refused further treatment of a restorative sort and opted for giving in to an earlier death, but she didn’t. Her blood count got very low, one lung collapsed, and she went to the hospital for a day or two, then came home again. Oxygen was used. This allowed those last couple of weeks to happen, and we were all glad. So, I am very careful when I talk to people about assisted suicide because we would have missed all of the above.

“Irma had become no longer embarrassed about our taking care of her physically and emotionally, but it took a lot of talking to get to that point. She learned to accept our care, and in doing so allowed us that period of intimacy. Although she didn’t want the kids to remember her this way, we told her that we would remember her when she was beautiful. And we did.”

What else is there left to say? This moving and poignant story illustrates to me how important it is for a dying patient to allow family and friends to participate meaningfully in end-of-life care. It contrasts with the choices of another friend who died with widely spread cancer.

She was in her fifties and was a good friend of my wife and mine, although we did not know her intimately. She had been health personified—a very active and vibrant person. However, she developed cancer that fairly rapidly became clearly incurable when it spread to various parts of her body. As she came closer and closer to her death—an obvious process—we inquired how she felt and how things were going. Her response was invariably “fine!” followed by an immediate change of subject. She was not comfortable with sharing any details of her illness with us, and she died without our being able to acknowledge to her our sorrow at her dying and the problems she was going through—but that was the way she wanted it.

Another friend in somewhat similar circumstances allowed us an entry into her problems, but on her terms—which was all right.

This friend had a chronic illness, which she managed with a stiff upper lip approach, successfully so. Early in the course of her illness, when I complained to her that she never let down her guard about her obvious illness, she agreed to talk about things in detail, but only on occasion—which we defined, literally, as once every six months. At those times, she would speak frankly about how she felt, and it was helpful to her and to us. In this way and in others she allowed us to help her as friends. It was a negotiated, but fine, compromise.

As this shows, people differ in how they wish to die just as they differ in their ways of living. While family and friends may wish to help and will feel more comfortable after the death if they have been a part of the process, it has to be on the patient’s terms.

LETTING THE PATIENT DECIDE THE GROUND RULES

When we attempt to help a patient who is dying, we need to remember that this help and support should be given on rules (expressed or implicit) set by the patient. It is the patient who is dying, and it is the patient who needs the most comfort, so the patient should decide whom they wish to see, when, and for how long. Some will want visits from many family members. Some will want a no-holds barred discussion of everything: past, present, and future; personal emotional matters; factual matters of what to do with the bank account; and an exploration of difficult relationships in the past. Others will want a much more limited exploration of the disease, prognosis, emotions, and personal matters. The patient mentioned previously, who was always “fine,” was in the latter category.

I am convinced, however, that if a friend or family member approaches the patient with antennae fully extended, it is possible to sense how much company the patient wants, what the patient wants to talk about, and what the patient wants to avoid. That should be the guiding rule. Respect the psychological background from which the patient comes, and pay attention to previously held religious and moral precepts. Make some gentle, physical contact, hold the patient’s hand, sit close with your head on a level with the patient’s, and speak of the good things he or she has meant to you, and you will do fine and will be a comfort.

SPECIAL ROLE OF FAMILY OR FRIEND WHO IS ALSO DESIGNATED PROXY AGENT

The person appointed as the medical agent or proxy who will legally speak for you in matters of medical decision making when you are no longer able to do so on your own behalf (see Chapter 12) may be anyone: a professional (such as a family lawyer), a close friend, or a family member. There is a real advantage, however, when the agent is either a family member or a friend since this person tends to know you well and be more easily able to say what you would have wanted had you been able to participate in medical decision making. As we shall see later in this book, the appointment of a medical proxy can be accompanied by specific written instructions or not. If you sign the delegation of authority and leave the details up to the agent, rather than being highly specific with written details, you are assuming that the agent will know what you would have wanted—either by virtue of having discussed it while you were still competent or simply on the basis of knowing you well through the years. This is most likely to be the case when the agent has been either a family member or a close friend. When possible, it is wise for you to pick such a person when selecting a proxy because there is usually a stronger sense of trust that proper decisions will be made.

EMOTIONAL, SOCIAL, AND SPIRITUAL NEEDS

A whole book could be written on this subject, but here I shall simply say it is paramount that the patient’s emotional and psychological needs be shepherded through the dying process as carefully as the physical needs. Family and friends should be encouraged to talk with the patient about dying and what it means to all concerned—while respecting the patient’s wishes and sensitivities as we discussed previously. Once death is imminent, both patient and family are more likely to say things they have hesitated to bring up. A deep, heartfelt discussion can help all those involved experience a sense of completion and feel more peaceful and accepting.

Reminiscences about good times can be interspersed with the more difficult subject of the dying process itself and its various implications. The bottom line is that simply talking substantively with the patient is a critical part of comfort care.

WHEN FAMILY AND FRIENDS DISAGREE WITH THE PATIENT

The decision to take the turning point toward comfort care is a decision that belongs to the patient, as long as he or she is able to participate in medical decision-making. Usually friends and family support the patient’s desires, but this is not always the case. There may be significant disagreement. In this instance, complex psychological factors are at play, and the physician or other counselor may need to facilitate an understanding between the parties involved. Nevertheless, the definite bottom line with an end-of-life patient who is competent is that the patient’s wishes are paramount. This legal right to make decisions about one’s own health care directly or through an appointed proxy must trump any doubts and disagreements among those family and friends who surround the patient.