Hospice care offers a program of life, not a prescription for death.
By MARILYN HENRY
When friends look at me anxiously, I’m quick to ask, “Don’t I look great?” This is not a question about vanity. 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 neither frail, emaciated nor 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 in New Jersey. 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 being cavalier about it; the dire diagnosis sent me reeling. But there quickly comes a 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 – can’t indulge in the luxury of wasting time or the bliss of ignorance.That would mean ceding control and losing opportunities.Many people endure debilitating treatments because they offer the hope for 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 amount of time I might gain with treatment. For me, this means registering for a hospice when the time comes. I am not yet “ripe” for this 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 a hospice is not curative but palliative – to ensure the patient’s comfort and dignity, said my oncologist, Dr. Minaxi Jhawer in Englewood, New Jersey. “A 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 25 years ago, and I am greedy for all the services a hospice can offer, for as long as it can offer them.AdvertisementBut this long view is not the usual view.AT A RECENT shiva call, I listened as a mourner told the sad story of her sister’s deterioration. “The hospice came in on Tuesday and she died Thursday.”This is the traditional narrow view: that a hospice is a type of care that eases the last days of life.A hospice can offer 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? Many people apparently assume that a hospice means death is imminent, and many do not use it for long, or at all. There are many reasons: Some don’t want to know or acknowledge that the end is near. Many are afraid or superstitious about speaking of death. Others think that enrolling in a hospice means 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 often destroy the very quality of the life they are supposed to prolong.A hospice offers a program of life, not a prescription for death. “If the patient felt a hospice was the place to come and die, they would not be getting the benefit of it,” said Dr. Charles Vialotti, medical director of Villa Marie Claire, the residential hospice of Holy Name Hospital in Saddle River, New Jersey.“For too long, our classic definition of a hospice was that it offers patients death with dignity. But it is offering life with dignity,” he said. “Just because you have a life-altering illness which you’ve been told can’t be cured doesn’t mean you can’t enjoy things 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, but their families recover more quickly, Vialotti said.THERE IS no single way that people deal with cancer, whether curable or not.Some talk about it constantly, or write blogs, columns and letters about their treatments, feelings, fears, prospects. Others talk very little and are discriminating in what they say and to whom. I am in the latter group. I want to live my life; I don’t want cancer to be my life. I’m not much interested in talking about my cancer or hearing stories of others’ ailments, and 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 a hospice – an institution that puts me at ease as I face a frightening future. I presume it is because they equate a hospice with death, and respond with a forceful combination of fear, anxiety and revulsion.Last summer, Atul Gawande, a surgeon and professor at Harvard Medical School, did much to dispel the fear of hospices 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, 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 otherwise...,” he wrote. “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 a hospice, because as the Torah commands us in Deuteronomy (30:19), I choose life.
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