An excerpt from To Die Well

Chapter Three, The First Turning Point: From Active Treatment to Comfort Care

…Eventually, it became apparent that Elizabeth’s cancer was very aggressive and overtaking her despite everything she and we did. In my regular house calls, I could see that Elizabeth was exhausted. She no longer had the energy to get out of bed, eat, or walk. Tension was developing within the family as her husband and daughters tried to do what they thought was best, pushing her to do activities that she no longer had the energy for. Her devoted family feared they were "failing" as they watched Elizabeth lose weight and require larger and larger amounts of morphine for abdominal pain.

One day I decided to intervene and said to Elizabeth in a gentle but direct way, "It seems to me that you, your family, and the cancer specialist are doing everything humanly possible, but the cancer is unstoppable."

"I'm exhausted," said Elizabeth. "I can't push myself any further. I can't go on."

In these situations, I find one can usually deliver comforting news along with the bad: "We can make you very comfortable. We can arrange hospice care here in your home. You could have intravenous morphine that can be dialed up at will for pain relief."

"I'd like that," said Elizabeth with obvious relief. "I'd like that very much. I just want to die in peace."

Over the course of the next few days I had several conversations with Elizabeth, Robert, and their two grown daughters at Elizabeth's bedside. (It is important to have these conversations not "behind the patient's back," but instead with all members of the family together when possible, certainly including the patient if he or she is able to participate in medical decision-making.) Elizabeth made it clear that she felt further efforts at trying to stop the cancer did not have a high enough chance of success to be worth the price she was paying in terms of side effects. After the initial shock, everyone in the family embraced the idea of taking the turning point, of switching the focus of Elizabeth's treatment from attempts to fight the cancer to comfort care to ease the dying process in the simplest setting possible—her home.

Robert and Elizabeth's daughters were very supportive of her wishes and totally committed to caring for her at home. They set to work turning the dining room into a downstairs bedroom for Elizabeth. All of the dining room furniture was moved out while a hospital bed was moved in together with many of Elizabeth's personal effects and favorite pieces of furniture.

Hospice was engaged. Hospice workers have endless experience ministering to the physical and psychological needs of dying patients and their families, and they were a big help to us. Hospice is committed neither to hastening death nor prolonging dying. Their workers enter the scene when the prognosis has become hopeless, and the patient is clearly dying. They have tremendous expertise in pain management and were immediately helpful in supervising the intravenous line that had been put in place for administering morphine.

As Elizabeth's primary care doctor, I took over her care from her oncologist. I visited her regularly and worked closely with the nurses who saw her daily and with the hospice personnel. Elizabeth and her family learned how to control the steady infusion of morphine to keep her pain free. Robert and her daughters stopped urging Elizabeth to pursue activities like eating, drinking, and moving about which she no longer wanted to do. Everyone accepted the inevitability of Elizabeth’s approaching death. We were at ease with the approach, because—at the turning point—all had agreed upon a re-definition of the goal of Elizabeth's care. No one was striving any longer for the unlikely or the impossible.

I explained to the family that Elizabeth's lack of interest in food or drink was a normal part of the dying process. So, too, was her somnolence and diminished responsiveness with the increasing doses of morphine. When Elizabeth was alert enough to converse, there would often be comforting reminiscences of times past and reassurances about what the family would do when she died. Although Robert and his daughters were immensely sad to watch Elizabeth slipping away from them, they valued the peacefulness that came over her with the change in treatment focus.

Toward the end, I visited more frequently to remind the family that they were doing the right thing and to assure Elizabeth that I would be there for her regularly to help with whatever came up. What families need at these times are support and reassurance, and, especially, recognition of the pain they are suffering and the selflessness of their efforts on behalf of their dying loved one.

Elizabeth died peacefully in her home surrounded by family three weeks after taking the turning point...