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.