In the 1990s, Dr. Jack Kevorkian drew national attention as a right-to-die activist. His career of physician-assisted suicide for terminally ill patients ended for him with a charge of second-degree murder and a prison sentence.
I, like many others, closely followed his story and wondered why there was not more support for him and his wish to help terminally ill people die with dignity. His belief: “Dying is not a crime.”
I now believe that as a society, we tend to mistreat terminally ill patients.
My 93-year-old friend Jean is an example. After deciding not to undergo further treatment for her recurring cancer, she could have died with dignity — if only someone could have assisted her death rather than let her wait, month after month, for her body to deteriorate enough for her to die.
By the time my healthy husband contracted a deadly bacterial infection a year later, I had learned enough about dying to help make the right decision for him.
Many people don’t have the chance to make a decision at all. Either they haven’t prepared themselves, or their doctor or family members influence them otherwise.
Sadly, many doctors seem to consider death a curable disease.
What makes all this even more difficult is that one’s own doctor, who has an understanding of and a relationship with his patient, takes a back seat, while a complete stranger, a hospitalist, attends the critically ill person.
In the Aug. 2 issue of The New Yorker, Atul Gawande wrote, “We pay doctors to give chemotherapy and do surgery, but not to take the time required to sort out when doing so is unwise.”
• • •
In the fall of 2008, Jean asked me to help her figure out how to die.
One of her sons had moved her from Aspen to Boulder so he and his wife could watch over her while she waited to die.
She confessed that she had collected 50 sleeping pills, but was fearful of taking them.
“Marge, I had no idea it would be so hard,” Jean told me on the phone. “I’ve been saving pills for this, but now I’m afraid they won’t work. You know, when you live to 93, you have a strong heart, and it isn’t easy for it to stop.”
Jean, a widow for 20 years, was a remarkable woman; strong, bright, clear-headed. She had been well able to take care of herself until a few months before. The uterine cancer that she had beaten at 86 had returned.
Her long-time Aspen doctor, in whom she had great confidence, discussed the options with her. Chemotherapy was likely to give her time, but no cure.
She consulted with an oncologist, her three sons, her friends. She decided that she had lived a wonderful, fulfilling life and that it was time for it to end. She turned her care over to hospice, moved to Boulder and prepared for death.
Luckily, Jean was in no pain and took no medication. Her only symptoms were weakness and fatigue.
Six months went by. The hospice nurse visited her once a week. But she was alone most of the time because her son and his wife worked. Her friends from her old life called and a few tried to travel to see her. But by and large she was very lonely, wishing she could end her life but afraid.
• • •
I did what I could to help her, gathering information and ultimately urging her to call Compassion & Choices, a national organization dedicated to the care and rights of terminally ill patients.
A counselor at the Denver office spoke with her and agreed to send some literature. Jean called me when it arrived.
“Marge, I can’t read the material,” she told me. “I want you to help me. I can’t do it myself.”
I replied, “Jean, it’s quite clear that they do not want me to do anything for you. You have to get the information and make the decisions.”
“I can’t do it, Marge,” Jean lamented.
Washington and Oregon are the only states that allow euthanasia, but there are strict rules as to who qualifies. However, many doctors will recommend palliative sedation to relieve pain.
According to Roland Halpern of Compassion & Choices, a study conducted by Medical Economics Magazine in 2002 showed that 6 percent of 5,000 physicians interviewed admitted helping their terminal patients die. It is widely suspected that more doctors do so, but do not admit to it.
Compassion & Choices receives about 250 calls a month for information on end-of-life issues. • • •
Each time I saw Jean after that, she was more fragile. She greeted me dressed, sitting alone on her sofa. Her mind was clear but she was so lonely. Once I took her to a neighborhood restaurant for pizza. She ate little.
And then the end came. “Marge, I’m different. You won’t recognize me.” It had been 2 1/2 weeks since I last visited her, and a caretaker had been hired because she could no longer be alone.
I called Friday to ask about a visit the next day and heard a different Jean. “No, I can’t go out to lunch. Marge, this is bad.”
I had to answer, “Jean, this is what you have been waiting for.” Her soft reply was, “Yes.”
When I arrived the next day, her son greeted me.”This is her first really bad day,” he said. “She’s in her room.”
She was in bed, her head propped up with pillows. The oxygen was clicking away. “Oh, Marge, it’s bad.” She was in pain and had just taken her first dose of morphine. “I had planned for us to visit in the garden, but then this happened.”
I kissed her cheek and quietly sat by her on the bed, holding her hand. The last thing she said to me before dozing off was, “Martin did it the right way.” Twenty years before, her husband, Martin, had been diagnosed with cancer. He took a gun and shot himself.
I sat there for awhile, hoping Jean wouldn’t have too much pain.
Dying is so awful. Why couldn’t doctors have just given her a pill when the cancer returned? And then the thought: How is it going to be for me? Can I do this differently?
On Monday afternoon, the call came: Jean had died that morning.
• • •
A year later, my 91-year-old husband, Bob, fell desperately ill and had to be hospitalized. At 2 a.m., I drove home for a much-needed nap.
I had just fallen asleep when my cellphone rang. It was the intensive care doctor who had seen my husband for the first time, calling to ask what procedures I would allow him to perform.
Did he have my permission to put Bob on a ventilator or use a defibrillator?
I immediately arranged for a cab to get back to the hospital.
For almost two years, my husband and I had been living in a retirement community, Vi at Highlands Ranch. We had been watching older people struggle to remain alive. One woman had a stroke and was unable to talk or walk and was sustained by a feeding tube.
We had seen some of our new friends have successful operations, only to be followed by staph infections, blood clots and pulmonary complications.
Bob and I frequently talked about end-of-life issues. The question we struggled with was how much suffering we should endure to remain alive. We filled out an Advanced Care Directive, which committed our beliefs to writing. And I had given paramedics that information when the ambulance took him to the hospital.
Fortunately, we had had those discussions; they gave me the strength to assert our beliefs when the ICU physician called.
Once back at the hospital, I remained by my husband’s side. He was suffering so much. I finally said to the ICU nurse, “Can’t you give him something to relieve his suffering?” She said he could have morphine, but then they would no longer be able to treat him aggressively.
At that point, it would have been nice if a medical professional had offered to discuss Bob’s care options with me. It was clear the nurse was not going to advise me.
Yet I felt certain that my husband would not get well again. “Give him morphine.”
When the morphine started to work, relief registered on Bob’s face, as well as mine and our daughter’s.
In retrospect, I realize the decision was not nearly as rational as it sounds here. I’m not sure I really knew that choosing morphine was signing his death certificate. I just knew then that it was the right thing for Bob.
Bob died peacefully 12 hours after they began the morphine. Later, we discovered it was highly unlikely that he could have survived the bacterial infection. If he had, his quality of life would have been seriously compromised.
My mourning the loss of my husband is tempered by knowing I made the right decision for him.
I don’t get it: Why are so many older people afraid to die? We know we can’t live forever. What is wrong with giving up or giving in when our bodies can no longer hold up?
I’ve learned a lot through Jean’s death and then Bob’s death. I hope my experience will help older people, their adult kids and doctors become more confident in making end-of-life choices.
Margery Fridstein (mfridstein@comcast.net) is a psychological counselor in Highlands Ranch.
