CHARLIE

In a recent case, a friend had been told there was no cure for his rare blood disease. He had been diagnosed with myelodysplastic syndrome that progressed to leukemia when he was 84. Knowing that he had no patience with the curative treatments being offered, he chose to use supportive therapies only. When he became unresponsive to the supportive medications and his condition continued to deteriorate, he and the family were advised that death might occur within six months. By now, Charlie was 86 years old and had led an exceptionally successful life. Upon hearing his prognosis, he announced to his doctor that he was unwilling to be treated by any medical means that would prolong his life. He was willing to continue the blood transfusions as long as he was experiencing some quality time with his family. He was put on a waiting list for a bed in a nearby Veteran's Hospital Hospice unit.

We had known of each other in the community but were not well acquainted. He called me because he knew I had specialized in working with families dealing with catastrophic illness. His home was only a short distance away so I agreed to pay him a social visit after being informed that he was on hospice care for his blood disease. Our first visit lasted 3 hours and we never stopped being amazed at how similar our thinking was about the big depression, the second world war and current politics. I began to visit him in his home as a friend about every other day, thereby becoming acquainted with his son, who was visiting from another State, and his daughter who lived nearby.

Although sad at the thought of his physical absence from their lives, his children promised him that they would follow his wishes. They agreed that there would be no heroic measures to extend his life and that he would be included in all decisions regarding his care as long as he was able. Because he was quite well known, he chose to keep the news of his impending death from public knowledge until the transfusions he was receiving began to lose their effectiveness. When he agreed to make the state of his health public knowledge, he experienced a deluge of visitors and felt energized by their presence. About that time, a bed at the Veteran's hospital hospice unit became available and he was moved to that facility. His loyal friends followed him and for another two weeks he enjoyed the total care and warmth of the staff who took care of him.

Because they were no longer effective, the blood transfusions were stopped, and with the use of drugs he was pain free for a time. He became physically weaker and weaker although he was completely mentally awake and aware. When the nurses could no longer get him out of bed to use the rest room and he was told of their plan to catheterize him, Charlie suddenly announced that he would not receive further visitors. He spoke with one of the hospice physicians and announced that he was ready to die and wanted to stop eating and drinking. She informed him that it would not help him die any time soon, and would probably take a few weeks. This is not backed by research. They continued to bring food trays three times a day in case he "changed his mind." He stared at the television with no sound for hours and days, his mind active and aware, but too weak to communicate.

His daughter insisted they turn him on his side, and give him the morphine that the doctor had authorized. The head nurse decided that the dose the doctor recommended was too strong, and called him, convincing him to cut the dose in half. When his daughter asked why, the nurse informed her that it could suppress his breathing. When she asked what difference it made if the death he was hoping for came a few hours earlier, she was told that they wanted him to have a "natural death." He was very restless, and without the energy to swallow fluids, he slipped into a light coma. One night later I received a phone call from his daughter. She was very upset because the nurses who cared for him were trying to coax him from his coma to give him liquid nourishment through a straw in the corner of his mouth.

"June, I asked them to stop, but they insist that he should have a natural death."

"Go back to those nurses and tell them they are thwarting God's will ... that it is Charlie's decision to let go of his physical body," I replied.

When a new nurse came on duty she assured Charlie's daughter that she would make sure he was comfortable, not in pain, and that the end was near. His daughter was fearful that all of his caregivers might not agree and so stayed by his bedside through the entire night. I joined her at 7 a.m. the next day and took her place at his bedside while she went to nap in the empty visitor's lounge. Several times, a nurse would hesitate at the door to his room, but upon seeing me there, moved on down the hall. Three hours later his daughter shuffled into the room and saw that he was peacefully resting and after telling him once again how much she loved him, left to go home for a few hours. I stayed the rest of the day, gently stroking his arm and forehead as he slipped slowly into a very profound coma. His daughter came back one more time and smiled as she saw his visible comfort. After a few moments, she said that she felt satisfied his coma was very, very deep, that she had no unfinished business with him so would go back home. I, too, left late in the afternoon. Half an hour after reaching home, I received a phone call telling me he had died. Charlie's son soon arrived and two weeks later a community celebration of Charlie's life was held with hundreds of attendees.

Five months later, when I found that the choice of how we die was being examined in many publications on both the East and West Coasts, I decided to share my experiences. In order to add to our knowledge of feelings regarding this choice, I set about interviewing family survivors who had accompanied a relative who had chosen to die.

5 MONTHS LATER – THE INTERVIEW

I approached Charlie's adult daughter because I feel it is important to know what the survivors of a relative who had made the choice for death felt some time after their absence.

I first asked her, "How did you learn that your Dad was choosing to stop eating and drinking in order to die?" Her answer came quickly and willingly. She reviewed the year previous to his death, which had included a severe bladder infection, followed by pneumonia.

"After recovering from the pneumonia it was discovered that he was severely anemic and he began receiving blood transfusions. Upon further testing, his doctor discovered that he had a fatal type of leukemia. The pneumonia came back and he began coughing up blood. At this point, he called me and my brother together and announced his wishes: 'I don't believe in life after death and I don't want to screw around. I'm setting up my finances so you can pay the bills but I don't want to die here in my home.'

"Following his wishes, his doctor had put his name on the list for a bed in the hospice wing of the Veteran's Hospital. Dad continued writing his newspaper column and enjoyed socializing as much as his energy would allow. Time between transfusions became shorter and shorter and he began suffering severe pain from infections that he was no longer able to fight due to his disease. He was receiving high doses of steroids that led to developing diabetes and all of its side effects. My brother and I both accompanied him when he was transferred to the Hospice unit at the hospital. We immediately communicated his acceptance of death to his doctors at the new facility as he became weaker and weaker. A public announcement regarding his state of health had brought dozens of people to his bedside at home and they followed him to the hospital. Their attention was a great stimulant and for a few days Dad sat up and enjoyed their support. When he was about to be catheterized he declared this was the last straw and made clear that it was his decision to stop eating and drinking."

I asked his daughter about her initial reaction upon hearing this. She did not hesitate and quickly replied that she had already accepted the inevitability of his death. She felt he had lived a good life, and was leaving nothing undone. She added:

"There is a time for death. One of the last things we did was reconcile the differences we had had in my adolescence and early adulthood. We had no unfinished business."

I asked, "Was this the first time you had known that someone could choose to die rather than continue curative treatment?"

"Yes, I hadn't had such an experience. When my grandfather passed away, I had taken a class on death and dying taught by Elisabeth Kubler-Ross. I had learned about all the differences in the way different cultures handle death. The movie "Gramps" had impressed me deeply. It helped when I was facing my father's death."

"Did he ever ask for your agreement regarding his decisions?" I asked.

"No, he didn't ask for family agreement but he had a signed 'Do Not Resuscitate' that was in place. He hated seeing my tears but I told him he didn't have to hang around for my sake. I told him to do what he needed to do."

"Did any health professionals ever try to stop your father from carrying out his decision?"

"My brother and I both saw him losing his ability to move. He kept trying to tell medical personnel that he was ready to die but they gave him spiritual advice and kept offering help. They never agreed that he could stop eating and drinking to hasten death. As he communicated less and less, I stepped in and asked for more pain control and also asked that his position be changed more often so that he was comfortable. I told them I was committed to helping him with this transition and hastening his death in any way I could. He had made this wish very, very clear. The nurses responded that they didn't want to be responsible for his death or to do anything illegal. I told them 'it is not illegal to stop eating and drinking or to give him morphine as prescribed.' I really believe their religious beliefs led them to continue trying to give him nourishment and I had to stay by his bed all night to protect him from their efforts to keep him alive. I was really grateful when you turned up at 7 a.m. and relieved me from this vigil."

"Did you ever see him wavering on his part regarding his decision?"

"Never."

"Did you ever experience any regret or anger that he took this path and didn't fight to stay alive?"

"I only experienced sadness and a growing awareness of loss."

"Looking back, would you have changed anything?" "No. It would have been more helpful if the hospice help at the hospital had been more willing to follow his wishes. The doctors in that unit are on rotation so we were dependent on the nursing staff."

"Was his decision a help or a hindrance in your grief process?"

"Because I was following his wishes, it made my grief process easier. I felt that having experienced anticipatory grief, I am a much wiser woman. There was no short cutting. The natural dying process has to go through known steps."

"Do you think you would follow his example under similar circumstances?"

"Yes. I would make very sure that my support, both medical professionals and family, understood my wishes. A misplaced trust in the doctor or nurses can be a surprise to the patient."

"Have you shared your experience of your father's choice with others? If you have, how did they react?"

"I haven't shared it with a lot of people, only family. My great uncle does not have a problem with this and has offered no push back."

"So you are at peace with this choice when doctors cannot cure an illness?"

"Yes. It helped a lot to have had many conversations when we were in previous crises and knew all the possibilities for keeping his life going. He came to terms with all the conditions under which he wished to stay alive. This was not the same as dying from dehydration when you are in perfect health. It makes it very different when you are dying from an incurable illness. All three of us agreed with his chosen manner of dying."

DENISE

Denise and I were long time friends. One morning, when Denise was 79 years old, she called and asked me to have lunch. I had no idea, other than the fact that we enjoyed each other's company, of what she was about to tell me. She told me she had just received a diagnosis of colon cancer from her doctor. It was his recommendation that she have immediate surgery to be followed by aggressive chemotherapy.

Denise was all too familiar with the serious nature of these procedures because of her work in the hospital. After careful thought she had decided not to have any medical intervention for her stage 3 colon cancer. When we met for lunch she went over the plans she had made. I listened with mixed feelings as she outlined her decision to die. Rather than face a long, drawn-out treatment plan which would include extended recovery phases as well as the strong possibility of death, she carefully detailed her wishes to me and was only asking if she had thought of everything. She also commented on her concern at spending thousands of dollars on what she considered the fruitless attempt to live longer.

At first, my thoughts centered on the reality of losing one of my best friends and the hole it would leave in my life. She made it clear that she was not looking for sympathy and was not ready to extend hers as she continued speaking.

"I am going to get a hospital bed placed at home where I can see my garden and ask a retired nurse that I know to move into my spare room. I have not spoken to her yet, but I'm sure that she can provide the pain control my doctor will prescribe. Then I will stop eating and drinking. As I said, I'm not asking you for an opinion, but I know you have dealt with many cancer patients and might think of something I need to do that I haven't thought of."

Taking a deep breath, I forced myself to focus on her immediate need. I began by saying that we must not leave any unfinished business that complicates the grief of our family when we die. Have you given thought to your legal papers, a will, a durable power of attorney? Will you tell Luke and Debra what you are telling me? Do you want to be involved in planning a funeral or an obituary? Are you going to get support from a hospice team and will your health care providers be supportive of your plan?"

She answered slowly. "I know that once I have stopped eating and drinking, death could occur within 8 to 12 days so I don't think I need hospice. Yes, I am going to tell my children exactly what is happening. I just hope they don't fight me on this. Since you know them both, I might need to have them talk to you if they have a conflict with it. I don't expect it to be too difficult because we have all talked about death a lot since their father died and they know that I am not afraid of it. Of course I may die very quickly because the cancer is already spreading."

Her friend who was the retired nurse agreed to move into the guest room of her home in order to be available for pain management. Denise asked if I could plan to stay over night with her occasionally to give her friend a break. A few days later I arrived with my belongings and her friend left to spend a night in her apartment. Denise smiled smugly and reported that she had not eaten or taken liquids for nearly three days. From everything I could observe, she was clean, comfortable and was still able to go from her bed to the easy chair by the window. Her lack of nutrition and hydration seemed to have made her somewhat euphoric.

The next morning she seemed very weak and did not want to move to the window chair. It was clear that she was rapidly losing strength. I talked with her son and he said that he and his sister would be over that evening. Later that morning Denise looked up at me and said, "I want a popsicle." I did not hesitate to get a popsicle from the kitchen freezer and Denise sucked on it with pleasure, handing the stick back to me when it was less than half gone. That evening her children arrived and although she was very sleepy, they had an amiable visit. Her friend returned and took up her skills in administering pain medication.

On the eighth day of her fast, Denise was clearly in the dying process. Both of her children returned and I spent the evening with them, sharing our memories of their mother and her many adventures. She had the support of her family and many friends because they all loved her and knew that her decisions were based upon her factual knowledge and her spiritual beliefs. She died two days later. The memorial service held in her church was attended by many, some of whom understood her choice to die without further treatment, and some who did not.

SEVEN YEARS LATER - THE INTERVIEW WITH DENISE'S SON

It has been seven years since Denise's death and I still can hear what she would say if she was alive, regarding current events in our world. It was with great pleasure that I had a reason to approach her two children for the following interviews.

Luke is very busy in his profession as a licensed clinical social worker and school counselor serving a large high school district. So we decided to do the interview on the phone one evening when we were both free. We agreed that our goal was to widen the knowledge of the general public or anyone reading this writing as to whether making a personal choice to leave their physical body leaves our loved ones with regret or anger. The first question was posed to discover how Denise's survivors first learned of her decision to reject medical treatment. Luke answered with positive enthusiasm, making it clear that he had given his mother's manner of death a great deal of thought.