A Time to Fight or a Time to Die? Part II

A recent New York Times Article: Helping Patients Face Death, She Fought to Live, tells the story of a 40-year old palliative care doctor who, when it came to her own end-stage cancer, was not able to follow the advice she gave her patients. She could not accept her impending death, did not get her affairs in order or sign up for hospice or other palliative support.  Instead, she took on increasingly more aggressive cancer treatments, when standard medical practice advised against it, in a desperate bid to stay alive. Her choice added substantial suffering to her final days and, because she refused to admit she was dying, her friends and family were never permitted to say good-bye. Did she miss out on dying well? Clearly for her, it was the only way to go.



The choice is never easy. How does one ever know when it is time to stop fighting and surrender to death? A good medical fight can add years to your life. My sister, a 14-year breast cancer survivor, is proof of that. The story of a friend of mine with pancreatic cancer is less clear. While she did survive most of the three additional years promised by her surgeon, she lost the ability to digest her own food, never returned to work, and spent much of her time in bed reading. Was it worth it in terms of the cost both physical and financial?  I think her daughter and husband would say it was. Knowing what she went through, I am not certain I would want to make the same choice. But then one rarely knows in advance the real impact of such medical decisions. Surgeons can be a bit hazy on what they mean by quality of life, giving a medical perspective rather than a clear picture of what it will be like to live  from inside. The question of what to do is further clouded by our mass cultural phobia about death. If there is no afterlife, which a large portion of the population believes or fears to be true, than the fight to continue living even a little bit longer might seem worth it whatever the cost.

Adding to the confusion about when to die is medical technology that can prolong life long after the body has lost it's own capacity to sustain itself; and by a medical system committed to preserving life; and by a reimbursement plan that encourages intervention over allowing nature to take its course. Treatment is reimbursable, dying is not. CPR, ventilators, heart/lung machines, blood pressure drugs, intravenous and stomach feeding can be wonderful and life saving tools when they snatch us from the jaws of death and restore us to our previous state of health. Less wonderful for the frail and elderly when ribs are broken and hearts are shocked in a final and futile attempt to stave off death, or when unconscious life is sustained in a "zone of indeterminacy" -- neither dead nor alive, while doctors equivocate over prognosis and families are unable to call an end to "heroic" measures. Still more disturbing is the macabre practice of warehousing patients, sometimes for years, in special hospital units on life maintaining equipment, because heroic measures saved them from death, but in a condition too reduced in mental and physical capacity to ever reclaim independence or even conscious thought. Then the question of cost may give us pause. Would you want to live that way? For a stunning account of the impact of medical technology, Medicare reimbursement policy and the hospital system on the way we die, see Sharon R. Kaufman's book . . . And a Time to Die -- How American Hospitals Shape the End of Life.

Once again I invite you to share your stories, thoughts and opinions. How far would you go to preserve your life? Do you believe in an afterlife? What are your fears about dying, if any? Do you have a medical directive in case you are unable to make your one medical decisions?

A Time to Fight or a Time to Die? Part I

When my friend, Marianne, had a recurrence of a particularly nasty cancer, she fought it for all she was worth. She was only 53 and not ready to die. Her oncologist told her it was time to sign up with hospice, instead she plopped down $4,000, crossed the Mexican boarder and returned with a bag load of experimental drugs. Unfortunately, she never could take them. She was already too sick. The doctor who facilitated this venture from his practice in San Diego failed to alert her to this fact. Such "experimental" or "alternative" doctors abound at the end of the line, exchanging hope for a pocketful of money.

She had cyber knife surgery to reduce one of her tumors and give her some additional time. It blew out both her kidneys and increased her chances of renal failure. The surgery may well have been palliative as the tumor was causing considerable discomfort. Whether it actually gave her extra time or reduced it, is anyone's guess. Over the next month, she entertained each of her three sisters and her brother in her tiny home and got to say goodbye.

Toward the end, her body kept swelling from lymphedema and she could barely walk. Yet she continued to hobble to work up until the day she checked into the hospital for the last time. Semi-coherent from an infusion of pain-killing drugs, she blurted out to a group of us that she still thought she might make it. She was finally moved to a hospice facility, mostly unconscious, three days before she died.

Three days is not much time for hospice to do its job. Hospice is about helping us die. And a lot of hospices are very good at this. A whole team of professionals come by your home to ease your suffering--nurses, social worker, chaplain, volunteer, home health aid. They work with pain of the mind and spirit as well as the body. There is no need for pain as there are many effective drugs, many effective strategies.

Dying can be a powerful time for healing and personal growth. See my film, Facing Death . . . with open eyes or read Ira Byock's book, Dying Well, for some wonderful stories about this process. Ira identifies four things people need to complete in order to "die well": forgiving others, asking forgiveness, expressing love and gratitude and saying goodby. Not too hard a list to remember, but not always easy to accomplish, especially if you choose to fight death until the bitter end. So many people do choose to fight, a little too long, until, like Marianne, they are no longer conscious. The average stay in hospice continues to be about two weeks even though a qualified person is entitled to up to six months. Medicare pays for it all if you're over 65 and many health insurance policies cover it for the younger crowd. It's a shame to lose out on this highly beneficial service.

In part two, I look at heroic measures to sustain life and the hidden costs of delaying death. Please share your thoughts and opinions about how we might best prepare for death.