A Lesson in How to Die and How to Live

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In the summer of 2005, my mother was 82 and had been in frail health for a while. Angina, hypertension, and chronic congestive heart failure were under control following an aortic valve replacement six years previously. Upon her return to Boston from a trip to New York for our daughter’s wedding, we noticed that her appetite had diminished and she was losing weight. She was severely anemic and was admitted to the hospital for evaluation and blood transfusions. Clearly something was going on, but her doctors did not know what.

About two years earlier she had told my sister and me that if she were to become seriously ill, she did not want any heroic measures, and she had signed an advance directive. She did not want to be intubated for breathing or for feeding. “No tubes!” She was emphatic. Now she refused any invasive testing to determine the cause of her weight loss and anemia. Her doctors rationalized that, given her medical condition, she probably would not be able to tolerate treatment for what they expected diagnostic testing to reveal, and acceded to her refusal. She agreed to blood transfusions to relieve the symptoms of her anemia, and she went home.

Shortly thereafter she said to me, “I know I am sick . . . and I know that I am not going to get better.” She loved life. She loved her life. She had devoted children, grandchildren, and great-grandchildren, and was much respected in her community. She had been married to a loving husband for 55 years and in the nine years since his death she had been able to take care of her own affairs and live independently. She knew that our time on earth is limited and felt, as her father had, that if God offered her another few years, especially if they came at the cost of arduous and painful medical treatment, she would refuse. She felt blessed, and was grateful, and felt that trying to get a little more time would be unseemly.

As a religious woman, she saw her illness as God’s way of bringing her life to a close. She accepted that and was determined that it happen as painlessly and comfortably as medical science would allow. She would not hurry it by even a minute, but neither would she interfere with its progress. If she became unable to make decisions for herself, she reminded my sister and me, she wanted to be comfortable and pain-free, but nothing was to be done to alter the course of her illness.

When she again became anemic she agreed to more transfusions. Despite a 32-year career in medicine, I did not realize until then how important it was that my sister and I act as advocates for our mother and “run interference” with the medical staff. Nowadays, a person’s primary physician, who knows the patient well, cedes care to a “hospitalist” once she becomes an in-patient. The hospital staff, in their eagerness to make a diagnosis and treat the condition, wanted to do all manner of testing on my mother and had to be reminded that she was there for transfusions to relieve her symptoms–nothing more.

By April she had grown weaker and said, “It’s time to call those people,” referring to the home hospice team. She wanted to make sure medications and staff would be available should she need them. She even spoke about dreams in which a black robed figure would appear and assure her that her children, grandchildren, and great-grandchildren would be fine after she left them. She took to sleeping more and more, although in her waking periods she remained lucid and in control. By the end of April, she had said her good-byes to family and friends and would not see any more visitors. By the last week of her life, she was awake only about five minutes out of every hour, but despite symptoms that would have been relieved by liquid morphine, she refused it, preferring that her waking moments be unobtunded by drugs, and that nature be allowed to take its course. When I offered her a glass of water, she looked at me, her eyes sharp as ever, and said, “You didn’t put anything in it, did you?” Her waking periods grew shorter and less frequent until they ceased altogether and she passed gently out of this life.

She had experienced the death of her parents and of my father, all of whom died at home surrounded by loved ones, and she was determined not to die a “medicalized” death. She was fortunate to have maintained her mental faculties until the very end.  More importantly, she had given serious thought to the eventuality and articulated her wishes clearly to her children. Knowing her wishes, and the values underlying them, made otherwise difficult decisions easier.  We were prepared to honor her wishes, and in so doing, honor her life and her conviction that a longer life is not necessarily better, it is only longer. Her legacy is her acceptance of the inevitable with the same courage and dignity with which she lived her life.

Rabbi Leonard A Sharzer, M.D.,69, is Associate Director for  Bioethics of the Finkelstein Institute for Religious and Social Studies at The Jewish Theological Seminary.

7 Responses to “A Lesson in How to Die and How to Live”

  1. Joanne Lynn

    I appreciate a good story that worked out well. Helps to fill out the array of chaotic and frustrating tales. In some countries, a hospital cannot discharge a patient without the outpatient care system agreeing to the plan of care. That would not only ensure that there really is a plan of care but also would shift the balance of power in health care toward supportive services. (From Altarum Institute’s Center for Elder Care and Advanced Illness)

  2. Susan Nelson

    Excellent article about a life completed according to the person’s wishes.

  3. jane gross

    My mother, too, refused any and all interventions after a certain point that didn’t improve her quality of life. Suffering to buy time did not interest her and in the years since her heath in 2003 we have learned much about medical interventions for the aged that either do no good, or actively do harm.Indeed, toward the end of her life, in a wonderful nursing home (no, that is not a tautology) — long after she had refused hospitalizations, ER visits, MRIs and the like, mammograms, Pap smears, antibiotics and even being weighed — she appreciated having her ears cleaned of wax so she could hear what was going on around her. Eventually, with the full support of the facility and after thorough due diligence on whether she was depressed or making a reasonable decision, she also declined hydration. Her’s was a peaceful death, on her own terms. In my experience, as a daughter, the founder of the New Old Age blog at the New York Times and later the author of “A Bittersweet Season” (Knopf 2011, Vintage 2012), the elderly themselves have far better sense about how much care is too much than many of their adult children and many fee-for-service physicians.

  4. Betsy Stone

    The moment that turned me into an advocate for hospice – and a warrior to help my mother fulfill her wishes – came when the pulmonologist in charge of her care told me, “It would be kinder for all parties concerned if she just winked out here in the hospital.” He ignored her terror and did not place any value on the experience of dying, surrounded by family, in her home. She had late-stage lung cancer and was a goner as far as he was concerned. Now I advocate for my father, nearly 96, and benefit from the support of an advanced illness management program here in Sacramento. Gratefully, my brothers and our medical support team are all on the same page. I am right in the midst of this experience (blogging about it at http://www.thehenrychronicles.wordpress.com) and more than a little worn out at times, but happy that I can support and protect my father at the end of his life.

  5. Alastair Macdonald

    I am 68 years old. I am still working full time as a renal physician in a public hosptial in New Zealand. I am also the chair of our local Clinical Ethics Advisory Group.

    I am proud to work in a public health system which was established in 1938. The New Zealand public health system is the first, continuously functioning, public health system in the world. We provide universal health care at a cost of
    $US 3022 for each New Zealander. At the same time the US spent $ US 8233 for US citizens. I am not aware that health outcomes differ signficantly between the two countries. I would conjecture that amongst the several reasons for the disparity in spending on each person in the two countries is accounted for by the fact that in the US, too much is spent at the end of life.

    Parenthetically, I would add that we are not immune to the suggestion that we in New Zealand sometimes have difficulty knowing when to pursue the idea of care rather than cure.

    There is anecdotal evidence that doctors tend to want less intensive ( and by implication expensive) treatment at the end of their lives. I note that there is a suggestion that research projects may be the consequence of the blog activity on this website.

    I suggest that serious consideration is given to the following proposal:

    1) Invite participants over the age of 60 years; from different professional groups, to take part in a pospective study until they die.
    2) The professional groups might be nurses, doctors, lawyers and accountants.
    3) Participants would be invited to be contacted each year to make sure that they are alive!
    4) Upon their death participants would allow access to their health records to examine the cost of health care in the last year of their life.
    5) An international study would allow international comparisons of health care spending.
    6) More importantly such a study would allow comparisons of health spending in different professional groups.
    6) Health care professionals know that the utility of some interventions at the end of life is of questionable value and comes at considerable expense. They may be less likely to pursue such options.
    7) Such a study would have the potential to leave a legacy for future generations who will face the responsibility for providing the resources to prop up a system which is creaking now?
    8) More importantly, in an environment where we quest for evidence based practice, can anyone come up with a better idea to answer the vexing question as to how we take care of our aging populations in the future?
    9) Would such a study help those who follow us to be able to put more emphasis on more care than cure in a truly evidence based way.

  6. Patrick J. Roden

    I worked in critical care for over 20 years and many times we were only prolonging death. The question becomes: “Are we extending health? Or are we extending life? They are very different…Sometimes death is not the worst alternative, especially if a solid faith in a after life is part of the equation.

    Thanks for this most personal story.

    Patrick J. Roden

  7. Michael Lovin

    As a 60 year old, over weight male, with Angina I have come to some conclusions. 1) The Doctors are too fast to follow conventional treatments for most ailments (especially heart problems) 2) While Doctors are mostly well meaning, they are influenced by A) Helping as many as possible in a workday, B) Greedy Pharmaceutical companies, C) A Fear of malpractice.

    I know this sounds like a wacko conspiracy mindset brought on by my anger over being helplessly sick. But it is not. I am a Degree Engineer, and was lucky enough to have traveled the world experiencing a great many things most have not been luck enough to do. I am also an avid reader with an Internet connection. I became motivated to learn about heart problems and the medical approach,….AND the results of the conventional treatments. I am still shocked by what I have learned. When I started having chest pains and shortness of breath, the rush to the emergency room was an eye opener, for sure. As an American now living in the Philippines, I was dismayed at the poor care, poor education, poor sympathy, poor advice, even worse treatment at most medial facilities here. Scared to die, skeptical of the advice, and angry at being sick while surrounded by incompetence was just too much to take lying down. I began my research to save my life.
    SO this post will not be 10,000 words I will try and summarize what I now believe as fact. By the way, I went from taking a handful of dangerous medicine (6 pills) and nitro tablets (every few hours) to 2 vitamins, 1 supplement pill. And a very rare Nitro pill (1 time a month if needed) Here is what I learned…

    1. Blood pressure meds kill you. They damage your liver, stop natural production of hormones, digestive enzymes and the AMA Database shows that 89% of patients taking the standard meds are rushed to the emergency for angioplasty within 6 months and 98% of all die within 3 months of the operation. Look it up.
    2. Pharmacy manufactures have a stake in the medicine NOT working because they make money with more expensive meds when you go for emergency operations. The doctors AND hospitals also benefit. No one benefits if you get well, do they? Only YOU benefit by being well.
    3. High cholesterol is indeed the number one cause of heart problems but it is NOT from eating meat, sugar, or fatty foods. Heart problems are caused by a continued diet of processed foods, additives, smoking, inactivity, and depression ……and is worsened by unbalanced diets which leads to inflamed arteries and internal infections. It is NOT caused by stress…in fact, stress signals your body to defend its self. NEVER TAKE ANXIETY PILLS for High Blood pressure! It is a sure way to die early.
    4. Go look at pictures of a heart attack victims heart after they died, and the heart was cut open…. No blocked arteries !…very odd indeed. WHY?…Because the arteries were blocked from inflammation not by plaque. I am not saying blood clots do not exist, they do…but this is a totally different medical issue. AND indeed there are traces of plaque on the internal wall of the arteries making the passages smaller and restricting blood flow. BUT, as this happens, your body if healthy, will simply grow another arterie to bypass the restriction…that is FACT. Your body is NOT triggered to grow new arteries when it is inflamed and infected, it just does not work this way.
    5 Think I am making this up? Who lives the longest with the least amount of heart problems? Your tempted to say Japanese, right?..Why? You believe it is the raw fish? Nope sorry you’re wrong. The Japanese have nothing on the Italians who gobble down the oil, wine, pasta and pastry. Average life expectance for Italians is 87 years at the time of this writing, the longest in all of the world. This diet taught to us by conventional thinking and Big Pharma is simply a ticket to the morgue, with a stop at the hospital to make a cash deposit before you check out.
    If you want to know more about this…let me know and I will send you a link to the writing on line… by the way, this is not a sales pitch, I sell nothing and ask for nothing. I simply want to share what I have learned to stay alive as long as I can.