Work of Full Circle Consulting - SF Bay: Resolving a Common Conflict in Medical Ethics – The Child from the Other Coast
Mother was dying slowly. She could no longer communicate. Her health care proxy (this was in New York) wanted to follow Mother’s wishes and keep her comfortable – palliative care – and to withhold artificial food or hydration when matters got to that stage. The relatives who lived nearby all agreed.
At 11 pm, the son from California, who had not seen her for 20 years, arrived on the ward unannounced and proclaimed that “everything must be done” to keep her alive. By “everything” he meant artificial everything – tubes for food, tubes for hydration, artificial breathing on a machine, a cardiac monitor and any resuscitation that might be indicated: a full-court press in the ICU.
Only 10% of us die quickly. An accident, murder, a massive heart attack or a stroke carries us off suddenly or we die quietly in our sleep one night. The other 90% of us have a long, protracted downhill course over many months, and with diseases like Alzheimer’s, over a few years.
In the early stages of a potentially fatal disease, say, cancer, there are curative treatments. Cancer might need surgery, maybe followed by radiation or chemotherapy. If the cancer recurs, a different form of chemotherapy may be worth a try, but the likelihood of cure becomes less and the probability of unpleasant side effects greater. By a third round, the patient or the doctor may hope “cure” but the reality is that in the unlikely event the new cocktail will at best prolong life a few weeks, maybe a few months. It is almost certain the patient will have side effects that are hard to tolerate. Many patients who had been through three rounds have told me the side effects were worse than the disease.
If the patient, the family, or the doctor are adamant that “everything should be done” matters progress sooner or later to an ICU. Life support means mechanical respirators, intravenous tubes, nasogastric tubes or direct stomach tubes, dialysis, heart monitors. The ICU has constant noise, constant bright lights, rare privacy. It is expensive setting. The attitude “everything must be done” is responsible for the adage that we Americans spend more on a medical care in the last few months of a person’s life than in all the rest of their life combined.
The alternative to “everything” is called palliative care. It provides more care, more effective care, and more preventive care than “everything.” Palliative care is often given in a Hospice, the hospital, in a special house, often at the patient’s own home.
There is lots of treatment. It is directed at relieving the many symptoms every terminal illness produces as one organ system or another begins to slow down and shut down. Other treatment helps patient and family cope with problems getting around or using hands and arms, and with social needs and problems, and with legal issues, and with psychological issues and needs, and with the spiritual issues that invariably arise at the end of life.
Does the patient feel abandoned by God? Are there life goals that need to be completed? Does forgiveness need to be requested or accepted?
An entire team of doctors, nurses, social workers, therapists, counselors, and spiritual experts work in unison to help patient and family. Other experts, like lawyers, may get involved from time to time.
This has led to a paradox. In many parts of the country, ¼ to 1/3 of the patients who are admitted early to hospice end up surviving with a good quality of life for two or three years longer than expected. It is due to the quality and breadth of care, which are greater than care provided outside Hospice. The Hospice team pays a lot of attention to preventing problems and to catch and reverse them quickly. Many people who work in Hospice think the relief from spiritual worries and social concerns plays an important role.
There are notable legal cases in which world-renowned Hospices were sued by the Federal Government for fraud because so many of their patients lived so long after admission. Luckily, this foolishness seems to have ceased.
What about the conflict between the son from California and the rest of Mother’s family? It’s a fairly common issue. (When Mother lives in California, the outsider is the “daughter from New York”.)
The key is the 20-year absence. There has been estrangement, deliberate or not, maybe in reaction to some disagreement or slight, maybe not. The son has a mixed emotions and needs. He feels guilty. He is longing for love from Mother, and to be able to talk with her either to give forgiveness or more often to seek forgiveness. He was not around and did not participate in the discussions the medical team had with Mother and the family, so he does not understand the futility of “everything” care, and that it actually makes matters worse, increases the patient’s suffering, shortens life, and costs family and society emotional and spiritual anguish and at least as much money as all the other medical costs throughout Mother’s life: all for a futile gesture. Futile, but well meant.
In our hospitals, three of us from the ethics committee would meet the son in a conference room on the ward. My colleagues were a nurse or social worker and someone from the community, usually a businessman with a strong interest in business ethics and medical ethics. I was the physician. We were joined by a senior nurse from the ward, the ward’s social worker, and sometimes the nurse who had cared for Mother the most in recent days.
The explanation was given kindly, gently, with compassion; never arguing. Each of us took part spontaneously. The gist of it was, “we understand. This has happened before. It doesn’t upset us. Your wishes are an expression of your love for Mother and your wanting to do the most for her, her comfort, and her happiness. Perhaps you are hoping against hope that she will wake up, by some miracle, and you’ll be able to talk with her. You’d like to make up, apologize, forgive or be forgiven. Actually, even though she is in a coma, we know she can feel and hear. If you stroke her forehead, hold her hand, talk quietly to her, some part of her will know, will understand, will appreciate what you are doing.”
Only when the son grasped this would we go on to explain that the kind of “everything care” he sought would make things worse; and we would talk about that only if he needed more reassurance that everything reasonable and helpful was indeed being done.
What We Do at Full Circle Consulting - SF Bay: Alignment under a Conflict over Vision and Drivers
Sun, Apr 8 2012 01:48 | coaching, improving law, motivating team to high-performance, alignment under conflict
Need for Modern Driving Regulations
What kind of vision cards should be used to test people for a driver’s license? New York State’s DMV in the late 1990s used cards like those in a doctor’s office. There was a large black letter at the top, and, descending row by row, smaller and smaller, less and less black letters ending in a line of really tiny letters.
These had practical and theoretical problems – not as used by a doctor or an optician, but as used to qualify drivers. A driving applicant would read the card with one eye, moving to successively smaller print, and then do the same with the other eye – but the applicant had already read the card and could give correct answers with the second eye for a line of print the second eye couldn’t see clearly. There were other problems: for example, the way light fell on a card in one corner of a DMV office instead of another part could affect whether an applicant would pass or fail.
Members of the Vision Committee were at loggerheads. The committee had half of the newly-formed Medical Advisory Board to the NYS Department of Motor Vehicles. The Department’s Commissioner and senior staff needed the Board’s input to craft new regulations and to defend them to the State Legislature. This was the first question the Commissioner and his staff had posed to the Advisory Board.
The question was whether or not to move to an entirely new form of vision cards. Newly published work in the medical-scientific literature showed that a different kind of card was more accurate for driving tests, less influenced by variations in lighting, and less susceptible to cheating.
The new cards had 5 or 6 lines of 5 or 6 letters, different letters in different orders, all letters the same size. The lines were chosen arbitrarily from the entire set of combinations of 26 letters taken 5 at a time in whatever order. The print size was the minimum an applicant had to be able to read standing at the DMV counter and looking at the card to show vision was sufficient for driving.
The DMV agent would pick out a line at random – “please read line 5 with your left eye,” and then another, “now, line 2 with your right eye”. No one could learn all the lines while concentrating on one, and there were too many variations in cards for anyone to memorize them ahead of time.
The Advisory Board had a mixture of professions. There were one or two physicians, research workers and other healthcare providers in each of the specialties the Commissioner thought would be helpful; representatives from state agencies dealing with aging, social services, and public safety; and representatives from enterprises and institutions throughout the state concerned with driving or with illnesses that might influence driving, the American Automobile Association for example. We were all assigned to one of two committees, Vision, and Loss of Motor Control (seizures, epilepsy, diabetes, sleep disorders, muscle disease).
I’d heard about the bitter division in the Vision Committee and as chair of the other committee, outside the conflict, I offered to help.
The first observation was that the physician-healthcare provider-scientist group were unanimously for the change. They had found a series of good, published research pointing to the need for change and to an effective method. They had not found anything that disagreed with these papers. They went through the articles with me and showed me why they felt this way.
The other representatives were all adamantly opposed, the ones whose background was in law or policy, not medical research. I asked, “why don’t you like the proposed change?” They pointed to the discussion section in the two most important papers. The authors had written that theirs was only one study, and the results should not be accepted until other laboratories had replicated the work. They had studied only a limited number of people – enough to give statistical validity, but perhaps a larger study would give different results. They had studied people of only one or two racial and ethnic groups living near their research center: things might be different with other groups in other parts of the country: “more research was needed.”
“See,” the opponents said, “the scientists themselves don’t believe their conclusions are warranted.”
I explained. If the authors of a scientific paper did not put in disclaimers, editors and readers would worry the authors had been biased in favor of the what they found even before they started the work. People would worry the authors might have ignored details and information contrary to their conclusions. Any piece of research is considered interesting but it is not definitive until other groups, somewhere else in the world, have duplicated the results. Almost all scientists want to continue to have funding for their work – these last sentences were code for “please give us additional funds so we can do more and learn more.”
Once the non-medical members understood the conventions of scientific work and writing, they agreed that the new system made sense and had clear advantages over the old. The committee wrote a unanimous recommendation to the Commissioner. The new cards were in use throughout the state within a few weeks.
Full Circle Consulting -- SF Bay: Examples of Work: Finding Alignment under Conflict to Change a Law
What happens if someone who is dying no longer wants food or water and can’t communicate this? What if the food or water is causing pain, breakdown of tissues, and increased suffering?
In the mid 1990’s, medical ethics emphasized patient choice and autonomy for quality of life and care in the last months of life: a patient should have the quality and the care s/he wanted. New York State’s law dated back several decades, to a time before ICU care or the modern conception of end-of-life care. It forbade removal of artificial hydration and nutrition.
What if the patient didn’t want them or the treatments were harmful? If a patient couldn’t communicate, they stayed – no matter prior conversations with doctors or with the medical proxy set up by a newer NY State law. Some hospitals and nursing homes felt the law allowed them or required them to impose their religious and moral beliefs on all patients in their care.
The bioethics committee of the state medical society debated the issue for two or three meetings. The committee consisted of 30 physicians, from academia, private practice; researchers on medical ethics, lawyers, administrators, and religious leaders. A few members of conservative religious and political backgrounds argued adamantly that the law could not be changed. Most of the liberal group couldn’t see a reason not to change it.
A year later, the state legislature and the Governor decided to revisit the law. They needed a decision of this committee: yes or no? We re-opened the debate. Again the conservative members dug in their heels. Again, the liberal majority couldn’t understand not updating the law.
When I explored, we all saw that each of the liberal members had withheld food and water when they thought that was the correct thing to do, ethically and medically. Had there ever been individual circumstances when the conservative physicians had withheld tube feedings or intravenous fluid from a particular patient who was dying?
Yes, they had often taken subtle cues from individual patients and then ceased artificial support. For example, a elderly man might tug at his nasogastric tube angrily to try to pull it out, over and over. Clearly he didn’t want it anymore; it was removed. An elderly woman consistently pushed away the baby-bottle full of Ensure given to her to suckle. Again, the sign was unmistakable and feeding was stopped.
The group in the minority could not imagine such subtleties being enshrined in law. That was the real issue.
I got unanimous consent from the committee to state this entire position as our consensus to the government: “a minority did withhold food and water in individual cases but believed the reasons too subtle to be enshrined in law; the majority thought the law should be changed.”
This I testified about in detail before the legislature and the Governor’s staff, being compassionate and truthful to both sides. The law was changed to allow patients and their proxies to withhold unwanted or harmful care, no matter the ethics or religion of the institution they were in.