When friends look at me anxiously, I am quick to ask, “Don’t I look great?”
This is not some question about vanity or beauty. It’s a light reminder that although I have incurable cancer, I look terrific. That is, I look like myself. A few years shy of 60, I am not frail, emaciated, or obviously ill. I enjoy my family, my dogs, my friends, movies, and Asian food. I am “highly functional” (in doctor-speak); I work, cook, and rake autumn leaves in my garden. My life did not end when I got the diagnosis seven months ago, or when I stopped medical treatment three months later.
I am not cavalier about cancer. The dire diagnosis sent me reeling. But there quickly comes the time to begin making choices. Although you can change paths multiple times, you still must make choices. Cancer patients – those whose disease can be eradicated, or controlled, or not – cannot indulge themselves in the luxury of time or the bliss of ignorance. That would be ceding control and losing opportunities.
Many people endure debilitating treatments because they may offer months or years of good health, if not a cure. I am not in that group. Seeing no rosy future, I chose to focus on the quality of my life, rather than the quantity of time I might have gotten with treatment. For me, that means registering for hospice when the time comes. I am not yet “ripe” for this system of end-of-life care. But when I am, a nurse and social worker, supervised by a physician, will provide pain relief and counseling for me and my family, in our home, to help us live as normally as possible for as long as possible.
This seems to me to be a peaceful way to meet the Grim Reaper, malach hamavet. The goal of hospice is not curative but palliative, to ensure the patient’s comfort and dignity, said my oncologist, Dr. Minaxi Jhawer in Englewood. “Hospice doesn’t hasten death. It makes the end of life more meaningful,” she said. “It equips you emotionally and spiritually. It doesn’t make you suffer.”
I have been an advocate of quality of life for the dying since my mother was in a hospice program a quarter-century ago, and I am greedy for all the services hospice can offer me, for as long as it can offer them. But this long view is not the usual view.
At a recent shiva call, I listened as the mourner told the sad story of her sister’s deterioration. “And then hospice came in on Tuesday and she died Thursday.”
This is the traditional, but narrow, view: that hospice is a type of care that eases the last days of life. Hospice can be that comfort for the final days. But it is much more. People with terminal illnesses – cancer, AIDS, Alzheimer’s – are eligible for hospice care for the last six months of their lives. If you can choose more comfort earlier, why wait until the last minute?
Many people apparently assume that hospice means death is imminent, and many patients do not use it for long, or at all. There are many reasons: Some don’t want to know or to acknowledge that the end is near. Many are afraid of or are superstitious about speaking of death. Others think that enrolling in a hospice is giving up on life and that their doctors are abandoning them. Cancer is sometimes seen as a disease that doctors treat and patients fight. Newspaper obituaries often report that someone died after a “battle” with cancer. It almost sounds romantic, until you learn that the battle may entail hospitalizations and toxic chemicals that can destroy the quality of the life they are supposed to prolong.
Hospice is a program of life, not a prescription for death. “If the patient felt hospice was the place to come and die, they would not be getting the benefit of it,” said Dr. Charles Vialotti, the medical director of Villa Marie Claire, the residential hospice of Holy Name Hospital in Saddle River.
“For too long, our classic definition of hospice was that it offers patients death with dignity. But it is offering patients life with dignity,” he said. “Just because you have a life-altering illness that you have been told cannot be cured doesn’t mean you cannot enjoy things that were important to you – love of family, beauty of nature, the visual arts.” Not only do hospice patients have a better quality of life in their final months, their families recover more quickly, Vialotti said.
There is no single way that people deal with cancer, whether it is curable or not. Some talk about it constantly, or write volumes in blogs, columns, and letters about their treatments, feelings, fears, prospects of recovery. Others talk very little and are discriminating in what they say and to whom they say it. I am in the latter group. I want to live my life; I do not want cancer to be my life. I am not much interested in talking about my cancer or hearing stories of others’ ailments, and I tend to dread even well-intentioned questions and advice.
I choose to discuss it now because of the paradox that so many people are squeamish talking about hospice, an institution that puts me at ease as I face a frightening future. I presume it is because they equate hospice with death. They respond with a forceful combination of fear, anxiety, and revulsion when they ask how I am and I start singing the praises of hospice.
Last summer, Atul Gawande, a surgeon and professor at Harvard Medical School, did much to dispel the fear and resistance to hospice when he wrote a powerful essay in The New Yorker magazine: “Letting Go: What should medicine do when it can’t save your life?”
“Like many people,” he wrote, “I had believed that hospice care hastens death, because patients forgo hospital treatments and are allowed high-dose narcotics to combat pain. But studies suggest otherwiseâ€¦. Curiously, hospice care seemed to extend survival for some patients.”
I am a lucky woman. I feel good, and I look great. And although in grim circumstances, I know I have choices. I will choose hospice, because as the Torah commands us in Deuteronomy (30:19), I choose life.