Thursday, December 24, 2009

Responding to comments by "Anonymous"

Thank you for your very thoughtful comments. Although I've never been a teacher in a formal way, teaching in various formats has always been a big part of what I do, and it's something I love. Stimulating people to think, and helping them to articulate what they may not have had an opportunity to put into words, is extremely satisfying.

The subject of death and dying is hard to get people to talk about thoughtfully, because it is so emotionally fraught and so easy to manipulate, as was illustrated this summer by the "death panel" debacle. It is extremely difficult to raise questions about end of life care, because no one wants to think about the fact that, at some level, care will have to rationed. There is simply not enough money to provide every possible treatment for every person with every illness (even leaving aside the fact that many of these treatments are futile, cause pain and suffering, and only prolong the dying process). And we do, in fact, have rationing now, rationing by price, which is perhaps the least rational way of determining care.

Hospice is, I think, a way of trying to step outside the mainstream and help people to think about death and dying in a different way. Too many people think that to talk of dying is "giving up," that it means a lack of caring, and that anything less than providing every possible treatment constitutes neglect. High tech medical care can be a great thing, when it enables seriously ill people to regain meaningful life, but it can also be a trap, leaving people to die a lingering death in an intensive care unit. I, personally, can't imagine a worse way to die--in a room where the lights are always on, where there are the constant sounds of machines, where peace and comfort can be hard to find. This doesn't mean I think ICUs are not good things. They can save people's lives, and the people who work in them are dedicated to providing good care. But, like anything else, they can be misused. And, for the person who values a peaceful death over perhaps a few more days of ICU "life," hospice provides a meaningful alternative.

It can be extremely difficult to sort out when expensive and difficult treatments should be used. It can't be decided on just a single factor, like age, because some very old people can still benefit from them, while others, who may be chronologically younger, can't. These decisions need to be individualized, taking into account numerous factors, starting from the patient's own wishes, and including family and significant others, caregivers, and various kinds of experts. Cost, of course, is also a factor; in this country, by default, insurance companies have become the deciders of last resort, because if they won't pay for a treatment, most likely the person won't get it. To say it again, this is probably the least rational way of rationing care.

A hundred years ago, most people in this country probably died at home. Death was a much more common occurrence, and I think people saw it a part of life, far more than we do today. We have made remarkable progress in eliminating deaths from infectious diseases and other preventable causes, so now people die more commonly from chronic diseases of old age. Because more people die in hospitals, we have become insulated from the reality of death. I'm probably unusual in that I witnessed the actual deaths of both my mother and my father. My mother died in a hospital, a death in which she suffered horribly. My father, a hospice patient, died the peaceful death he always said he wanted. "I want to go to sleep and never wake up," he used to say, and in fact, that's exactly what happened. Having seen that reality makes it much easier for me to contemplate my own death.

I think there have been societies which have found ways to integrate the concept of death into the overall model of what makes a good life, and I understand that what follows are hypotheticals which may idealize and simplify to make the point. These two examples may not be accurate historically, but I am using them to try to illustrate a thought, so please bear with me.

What is important is not the particular way in which a society treats the elderly and ill, but whether it is part of a broad consensus, so that people know what to expect in the closing years of their lives. For example, traditional Chinese society venerated the elderly family member, who was seen as a source of wisdom, and was due the utmost respect, even if the individual was unable to contribute to the household. Unlike us, people did not live in nuclear units, but in multi-generational extended families, and caring for the elderly family member (or members) did not fall on a single individual. Therefore, people could expect that they would receive lifetime care, which, I believe, made them less fearful about old age and death. Those who took care of the elderly did so with the knowledge that they would receive the same kind of care when they became old. In China today (as in many other cultures), we are seeing the breakdown of this pattern and the problems of caring for the elderly emerging as a societal challenge.

A diametrically opposed model is traditional Eskimo society. Perhaps this is a myth, but again I am using it to try to make a point. This was a subsistence society, in which food was scarce, so there were few resources available for people who could not contribute economically, by hunting, gathering, or preparing food. If someone became too old or too ill to do so, the community could not sustain them, and the person would be put on an ice floe to drift out to sea and a certain death. In our context, this of course appears heartless and inhumane, and it surely would if it were imposed on someone who had never heard of the concept; to a person for whom it was an expectation, on the other hand, it would not seem shocking. It was not seen as abandonment, but as what people should expect at the end of life, and I believe was done with love and respect.

In our own society, we have not developed a broad social consensus on caring for the elderly and chronically ill. This is the point I was making in my letter to the Boston Globe; nursing homes have developed largely in the absence of such a consensus, as the default option rather than as an expression of social policy. Working in these institutions is not valued; these are low wage jobs with low pay and high turnover. There is minimal training, which can lead to abuse as underpaid and undertrained workers struggle to take care of too many people to whom they have no social ties. Again, this does not mean that there are no good or caring people working in nursing homes; it is a tribute that many nursing home workers do provide kind and loving care in such environments, with little social support or opportunities to have their work recognized and honored.

I would like to see the hospice concept expanded to provide care not just to the dying, but to others who now languish in institutions. I have written a lot in this blog about the connections I see between my long-time work in the psychiatric survivor movement, in which we have always promoted the concepts of empowerment and choice, and what I have experienced in hospice. I see these values carried into practice in hospice, and I believe they can be brought into many other settings. But this can't happen in the absence of forums to develop a broad societal consensus on dealing with difficult questions.

The current status of the health care debate, with terminology like "death panels" and "rationing" used as sloganeering to shut off discussion rather than promote it, gives me little reason to hope that such necessary discussion will happen, and, in its absence, we will continue to see the unfortunate results of policy making by default rather than by purposeful choice.


  1. Judi,

    Thank you again for all of your thoughts, wisdom and teaching.

    Have you ever heard the story of the two waves as they approach the shore? One wave says to the other, in a panic, "Oh no, here comes the shore. This will be the death of us. The other wave responds, "My friend, you misunderstand. We are not waves, we are the ocean."

    Wishing you peace,

  2. Keep writing,Judi. What you just wrote here is so thoughtful and perceptive. I'm proud of the friendship we have had, and grateful to you for it.

  3. A beautifully written piece Judi. If you wonder why you are lingering on this earth, perhaps one answer may come from the lessons and wisdom you are sharing with others.

  4. Thank you for your Dec 24 entry, Judi. I particularly valued it as an ex-hospice patient, having temporarily improved to the point where they won't cover me any more, but they did for eight months, which I appreciated very much. I also have lung disease, and expect that at some point I will use hospice again.

  5. Hello Judi,

    This isn't really a comment on your recent post. I just stumbled upon an article you wrote in 1998 ("Confessions of a Noncompliant Patient") and it inspired/led me to this site. I've never been in an inpatient psych facility, but my son (26 now) has landed in several, with varying diagnoses. Your assertive voice helps me appreciate his resilience and potential. Thank you so much, and may peace be with you!
    - Al's Mom

  6. You said:
    "Hospice is, I think, a way of trying to step outside the mainstream and help people to think about death and dying in a different way. Too many people think that to talk of dying is "giving up," that it means a lack of caring, and that anything less than providing every possible treatment constitutes neglect. "

    I think that you are correct - we definitely need a paradigm shift in how we approach death and dying. It reminds me of the old adage: 'just because we can does not mean we should." Sure, we CAN keep treating people with end of life illnesses - but with no hope of a cure or any meaningful life extension - such treatments can be tantamount to torture. Needles, perhaps chemo that renders someone so ill that they can not stop vomiting or get out of bed. Is that what we call life?

    Often people at their end of life choose to try such futile treatments because the family wants them to. It is like families who try to force feed a dying person thinking it will keep them strong. The dying person may be very ready to go, but the family can't let go. So they plod on with treatment after treatment, but often without any meaningful quality of life.

    You said:
    "In our own society, we have not developed a broad social consensus on caring for the elderly and chronically ill. "

    I respond: No we haven't. Over the last 100 years, we as a society have often abdicated the idea that families are the best caretakers for the family elders and feel no responsibility to assume any caretaking role. I think it is a byproduct of the post WWII years when technology and scientific and modern was taken as the "best way" automatically. Our society promoted (and continues to promote) mobility and freedom above responsibility in many cases. Nursing homes are often thought of as an entitlement - a benefit that eny elder should take advantage of just like social secueity and medicare. There is no thought about if it is the BEST thing.

    For sure, many elders need such nursing care. But many don't and would thrive and have a better semblance of a life if they were in a family home surrounded by people they know and love.

    I realize my view on this may be slanted - I grew up in a home that included not only my grandmother but my great-grandmother too. My elderly mother now lives with me and my wife and while it does require more responsibility and ties us to home a bit more, I wouldn't have it any other way. It was a joy and a blessing to have been raised with the wisdom of my greatgrandmother who was born in 1884. Through her, I have been able to be touched by her parents and grandparents who she knew - and in me, I harbor the teachings of family members borm in the early 1800's. That is amazing to me and a blessing I would never have if my grandmother and great-grandmother were shipped off to a home for strangers to watch over.

    My mother took care of everyone in the family until their death: her grandmother, mother, my dad, her uncle and aunt. She never complained. And she sure did a lot of taking care of me as a kid, through every strep throat, childhood illnes and broken bones I suffered. The least I can do is give her a clean, safe place to live and make sure she is comfortable and well looked after.

    Hospice at home comes full circle - back to care at the home by loved ones with the support of the hospice team. A patient-centered circle of care where the patient comfort comes first. Hospice takes a certain level of acceptance, of course, by family as well as patient. It is acknowledging the finite nature of life. But it can also be celebratory - with the realization that the end is near, things that need to be said or done can be done. The procrastination of that return phone call, or a hug, or apology has no more room for the nebulous tomorrows. The realization is that today is the best day to do that because the limited number of tomorrows has been acknowledged.

  7. Thanks, Anon, for keeping this dialogue going. I think it's very important in this topic not to polarize into "keeping the persoh at home" equals "good" vs. "put the person in an institution" equals "bad," and intead keep the focus on how few social supports exist to help people to keep a family member at home. I applaud you for taking care of your grandmother and pointing out the advantages of it (not just the drawbacks that I think most people would point to), but it's important not to make anyone feel guilty because they may want to keep a family at home but lack the social supports, or because they choose institutional care. I'd like to see broader dialogue develop on this question, and I think will suggest it on the main body of the blog.

  8. Hi Judi, I stumbled on this blog by accident (if there is such a thing) and just wanted to tell you what a huge difference you're making in the world. Thought provoking in areas where most people just don't want to go. Best wishes to you all!