Allow Natural Death

Last week my local paper carried an article by Jane Brody of the New York Times. I wrote about Jane Brody here in January because I am already a fan. This article is another example of her ability to take a critical issue in the life of American families (chronic disease) and our country’s budget short falls (growing costs of health care), and parse them in a way that illuminates the complex pieces of this problematic puzzle. The problem: treating many illnesses in one patient costs a lot of money.That number is growing because the number of aging persons is growing. (>age =>illness) The cost of all this care is draining  entitlement programs like Medicaid and Medicare. What to do? I don’t pretend to know.

Interesting (but not surprising) that Brody chose an expert to quote who is a geriatrician. Dr. Mary Tinetti advises patients to choose a plan for their care that will help them to decide the treatments that they may or may not wish to pursue as their disease progresses. What is a plan of care, you may ask? The plan of care is something that your health care providers are talking about as they discuss with you how to proceed. It is the way that we want to lead our lives as we grow old with chronic illness. And the older we get the more likely it is that we will be living with chronic illness at the end of our lives. How much effort do we want to put into staying alive? It is necessary to ask these kinds of questions after each hospitalization or visit to the emergency department……

to be continued…………..

Yesterday I attended an event that was attended by about 25 wellness practitioners from southern Vermont. We all introduced ourselves and spoke a bit about what we do. There were Reflexologists, Massage Therapists, Reiki Practitioners, Avatar Instructors, Nutritionists, Herbalists, Yoga Instructors, Naturopathic physicians and others I am probably forgetting. I was the only Elder Advocate/End of Life Planner. Big surprise right?!  Following my elevator speech, I was approached by two folks who (separately) asked me how to convince their elderly loved ones that they should “allow natural death.” Perhaps it is surprising to know that I don’t recall ever being asked this before. But yesterday, at least two people were speaking from a place of sadness at the suffering that their elderly loved one is choosing as they put quantity of life ahead of quality.

My response has its basis in the tenets of  medical bioethics as we currently practice them in this country.  There are six (or for some, seven) of these and they are; 1)preserve life, 2) decrease suffering, 3) do no harm, 4) autonomy, 5) everyone should be able to get care (distributive justice), 6) truth telling, and some would add …7) integrity of the health care profession. When it comes to decision making, autonomy rules. It is the choice of the patient (or the person speaking for the patient if they are unable to do so) that will be honored. But nothing is simple where bioethics is concerned, so when it comes to the care of those who are frail elders, it may seem that #’s 1 and 2 are often in conflict. i.e., when preserving life actually increases suffering and/or the duration of that suffering. Does that then fulfill the requirement that no harm be done? And what about truth telling? Is it honest to suggest treatments when it is clear that they will increase the burden of care for the family of the patients while not offering significant improvement in the quality of life? Those are only a few of the questions posed by such situations and I for one am glad that we take the time to carefully consider the decisions that most of us will need to make at some point in the lives of our loved ones or ourselves.

So is it desirable to try to influence the decisions that elders (and all of us really) will need to make? Yes and no. Yes, if we think of “influencing” as educating, and no if we are seeking to exert our own will. To truly honor the autonomy that is guaranteed to Americans by the Patient Self Determination Act, we must allow patients to make their own decisions, even when those decisions may be viewed as foolish or too risky by family, friends and health care providers. It is only necessary that the patient be judged to be of sound mind and that needs to be determined by an examination by a professional.

Education that influences health care decisions are common in organizations where shared decision making is practiced. As is the case when a patient with breast or prostate cancer is asked to view informational presentations regarding treatments and risks before they are asked to decide which treatments to pursue….and which to forgo. But such education is more difficult when it comes to advanced aging and dying. The effect of treatment on an aging body, combined with a number of chronic illnesses, is not nearly as exact as comparing surgery vs. chemo results in younger individuals with no other illnesses. And it is exactly the combination of decreased abilities to function, and the cumulative damage caused by years of living with a chronic illness (or two or three) that affects the quality of life that most of us seek to preserve. …but there comes a time when it is no longer possible to preserve a body that has passed the point of repair.

I was moved by a study that was done with healthy adults who were asked to choose treatments that they would or would not want as they moved toward frail adulthood. I don’t recall all the details but it was of great interest to me that after the group viewed a video of an elderly woman with advanced dementia, the group reconsidered their earlier treatment choices. Most of the group decided against many of the treatment options, they had previously chosen, after seeing what it really looked like to be afflicted with dementia. Very few of us have seen a person who has lost the ability to recognize loved ones and who is completely dependent for all aspects of care. We avoid such experiences in fact, finding them disturbing, and wishing not to know what this group learned in the course of the experiment.

To me this is the sort of education that can influence decision making. It will still be important for some individuals to choose to preserve life at all cost and I have said before that allowing natural death is not for everyone. But for those of us who wish to avoid prolonging that time when we may be afflicted with advanced dementia or other end stage illnesses….we would choose to  allow natural death.

Today I would like to question some of the assumptions that I made yesterday. The first being that it is now acceptable for us to talk about the rising costs of keeping us alive when we become frail elders. If I were seeking political office, I don’t believe that I would ever want to speak to this topic. And for those who jump to talk of “death panels” when the topic of end of life care is raised…probably it is not acceptable to speak of the costs of care around those who fear this. When I say that it is now acceptable to delve a little more deeply into how Medicare dollars are spent, I think about the segment on Sixty Minutes titled The Cost of Dying, that I wrote about back in January. This segment is quite clear that spending on care at the end of life has the ability to bankrupt the systems currently in place. This is prime time network television making points about rationing care and Medicare spending and showing us exactly what sort of existence the dollars spent are buying for those patients unfortunate enough to be dying in a hospital ICU.  My 78 year old father watched this program and stated that he “never could have imagined how much these treatments would cost”. He is a person who is now rethinking his end of life plans after telling me three years ago that he would want “everything done to keep him alive.”I know that what he saw in that episode of Sixty Minutes has given him more to think about as he makes a new plan.

If a television program gave us permission to talk about the cost of care for those at the end of their lives, be assured that it is something that those working in health care have been thinking and talking about for a long time. As aloof as health care workers would like to be, it is certain that there are times when their belief that resources are being wasted on the care of a person who is dying, will color their interactions with that family. This was a topic for many of these workers long before the calls for health care reform became so loud. It is difficult to work with families who are choosing to continue treatments that are painful and invasive because they are not ready to  accept that a loved one is dying.

To those on the front line of care it has been obvious that care is already being rationed in any number of ways as resources become more expensive and scarce. Take, for example, the dilemma that is posed when two patients who are being cared for in the hospital, both experience a crisis.  They must be moved quickly, to a bed on the Intensive Care Unit to receive more intervention to keep them alive during this emergency. But there are two patients who are so ill that they may die… and only one bed. If one of those patients is 45 and one is 75, it is the younger patient who will almost always go to the bed first. That is one way that care is rationed.

If you think that we should just make more ICU beds in hospitals, then you may be surprised to learn that that way of thinking is part of the problem. If we build them they will come. That has been the business of health care for a long time now. For those who are seeking a less technology-filled end of life and a more peaceful and dignified death at home….those beds we have added over the years have been filled with those who come. If a community opens hospice beds …they too will be filled most of the time. If a community opens ICU beds …they will be filled most of the time. Much has been written about the business of health care, but Atul Gawande has written about the “if you build them they will come”  phenomenon in this article. Building more and better technologies has convinced us that they will save us from death for almost ever, if we only use them. That has become expensive. Much like the medications that are advertised to stave off the aches and pains and indignities of aging. How many times have we heard someone become angry when “the doctors can’t figure out what’s wrong with me!”  It is as if we feel entitled to the new medication, new treatment, new doctor, hospital bed, Intensive Care Unit bed that will get us to an optimum health state once again. But at some point it can’t be fixed…and figuring that out has cost us plenty.

Today I have included  links to two very important influences on my work ; Sixty Minutes: The Cost of Dying  and Atul Gawande’s article.

Tomorrow…..the Dartmouth Atlas.

I don’t know how or when it became acceptable to talk about the dollar signs attached to caring for us when we are very, very old and dying elders. The baby boomers are responsible for forcing this to the top of the news heap now because there are so darn many of us. The challenge of paying for care could not have been a surprise to those who pay attention to the simple demographic changes that accompany a population boom of 76 million born in the 18 years following WWII. But most of us did not. The individuals who decide the policies that guide all aspects of our American lives have had opportunities to raise unpopular and alarming concerns. But many were not given much attention. The decades leading up to the current crisis in health care gave plenty of warnings that someday our systems just couldn’t keep up with demand. Just as new schools were built to accommodate the influx of school age children when we were young, new systems will need to be found to accommodate the influx of aging persons when we grow old….and hopefully even sooner.

January 1, 2011 marked the 65th birthdays of the first baby boomers who are eligible for Social Security. And Medicare also becomes ours for the asking when we reach 65. We call these programs entitlements. It will be interesting to see what baby boomers, who are considered to be an entitled bunch to begin with, will do about the crisis facing our country in funding those entitlements programs. The entire financial situation is critical enough now that politicians are risking their political futures by trying to curtail union pensions and benefits in an effort to fiscally manage crises at the state level. Some politicians have mentioned the third rail subjects of cuts to Social Security and Medicare. Even before the fiscal crisis two years ago, we were being warned by some major players that “health care Armageddon” was on its way. Those were the words that Bernadine Healey, MD,  past head of the National Institute of Health used in October of 2008.

Add to the huge numbers of aging baby boomers, the unintended consequences of advances in therapies that extend our lives beyond what we could have imagined in 1935. That was when the first Social Security payment was made to a Vermont woman, Ida Fuller. The life expectancy of Americans was 65 then and I doubt that anyone could have foreseen the astronomical growth of “older” persons that is happening now. By 2050 the numbers of folks over 85 will triple to 19 million. It is estimated that one third of this group will have some form of dementia. These are some of the numbers that are considered when I say that new arrangements are needed for how we will care of ourselves when we become frail.

I think we all know that health care reform is being talked about now because it is a crippling expense and our system of paying for care for sick persons is causing much suffering. It’s expensive and it isn’t working. Those working in health care have a lot of thoughts on this topic. Spending some time with an organization that seeks to serve health care needs for any population is a lesson in bureaucratically induced waste. Some on the front line of health care are speaking up about dwindling resources that are being used by those who won’t live to benefit from them. It isn’t comfortable to talk about these things, but it is happening more and more. It has been conjectured by some that if we stopped paying for this kind of care we would have plenty of health care dollars to spend on universal health care.

What does all this have to do with Allowing Natural Death? To me…a whole lot. I will talk more about that tomorrow…..

On Valentine’s Day I began a series of posts about how love influences what I and many others do in our work with those at the end of their lives. It has been only ten days and I have not come close to exhausting this subject.  I am glad for that, but I am also a bit spent. Talking about death and loss and letting go every day was a little bit  hard, but when I added love to the mix, it got so much harder. So I am leaving the love topic for now with so much more to be said …as I return to the mission of the Grateful Apologist ;It is my sincere hope that these daily writings will help you to understand how the concepts of allowing natural death can bring us to a place of peace and comfort and love at life’s end….and why this is work that needs doing.

More love later………..