A conversation that is under the radar might surprise some… the ‘exit strategy’ conversation.

The health care topic seems to be getting a lot of attention these days. In Vermont the Death with Dignity Bill was to be considered by the Legislature during the current session. It is now reported that the Bill will be put on hold. Physician assisted suicide is a controversial topic. Moral, philosophical, and scientific considerations are included in the debate.

In complete disclosure – I believe that all life is sacred. That puts me on one side of the argument – sort of. I also believe that if pain is so intense that it does not respond to any drug, compassion might be the preferred stance. Moral conundrums always make life complicated. To gain some clarity on this question, I recently had a conversation with a doctor. I chose a doctor who is highly respected for her humanitarianism. My question was whether or not pain could be so horrific that nothing would relieve it. I suggested putting the patient in a coma. The doctor told me intractable pain is something that can happen, and then she quickly expanded her answer. She said it is extremely rare. That is reassuring. It seems to me, a patient in pain should be given anything that works – morphine drips, pot, absinthe – anything if it can relieve intense pain. When nothing works, we have to rethink the moral dilemma.

The final decision about any medical procedure should be the right of the patient. To insure that this actually happens during a medical crisis, a health care advocate is necessary – not a health care contact. A ‘contact’ person is someone who exists for the convenience of the hospital. An advocate has a totally different role. The advocate can save a life or give permission to pull the plug. Your health care advocate is the most important person in your life. Usually, this is a loved one in the family – a spouse, a son, a daughter, a parent. In this culture the role of ‘family’ has been trivialized. Now many have no family in the same geographical location where they live. How can they have the ‘protection’ of a health care advocate? A less than perfect solution would be for every hospital to have on duty 24/7 a Patient Advocate who is not employed by the hospital and not in the chain of command of the hospital. This is necessary to avoid conflict of interest. Having a hospital Patient Advocate is like putting a band aid on a fractured skull, but it might be better than nothing.

Another solution would be to match those without an advocate with a compassionate member of the community. A project such as this could be taken on by church or civic groups.

Does pre-planning take care of end of life issues – maybe, or maybe not. An Advance Directive is only as good as the advocate who has the responsibility of insuring that the written requirements are met. Without a dedicated advocate, the Advance Directive is just another piece of paper.

The case of 30 year-old Ronald Comeau made nation-wide news a while back. He really needed an advocate as the decision to pull the plug was being considered. This case fascinated the nation when it was reported across the country.

Another more recent case proves that an advocate is necessary even after death. This case is sometimes referred to as the ‘Case of the Body Snatchers’. Even being rich and famous is not a guarantee of justice after death. The body of Alistair Cooke, British Journalist and host of Masterpiece Theater, was one of many that were not protected as required by law. The cutting apart of human bodies, so that human tissue, skin, and bone could be sold was a thriving business – for a while. It is not known how widespread this criminal activity is today.

Sometimes an advocate should even be present during dental procedures – as in the recent case of the Massachusetts dentist who used paper clips for root canal procedures. He is currently being prosecuted.

And then there are the murders in nursing homes – two have been publicized in Vermont lately. Is this just the tip of the iceberg? How many go unreported? No one will ever know. As a volunteer in a nursing home, I saw some things that were very troubling. But, on the other hand, I was impressed by some of the staff who did the real work of caring for the residents. Those staff members were kind and compassionate, and probably underpaid. Even with dedicated workers, a nursing home resident needs an advocate – one who will visit at unpredictable times. A reputable nursing home in Pennsylvania stopped feeding a resident. When the family questioned this, they were told, “Well, he was going to die anyway”.

One of the most important duties of an advocate is to guard against medical errors. My mother’s life was saved twice when we caught medication errors by the Hospitalist – the doctor assigned by a hospital in Pennsylvania. My mother’s personal physician would not have made these errors.

Medical personnel are among the most highly respected and valued members of the community. Excellent doctors saved my life twice. Most of us are blessed with dedicated doctors who are not paid what they are worth. Some surgeons and GPs are grossly underpaid. Too much money in health care goes to the top – pharmaceutical company CEOs, insurance company CEOs, hospital CEOs. Health care will not improve until the insurance companies are eliminated. Price controls on pharmaceuticals are needed. In Vermont, too much tax payer money is being drained from the system by the committee of experts hired to design the new system. Every dollar spent on administration, is a dollar that does not go to patient care.

A conversation that is under the radar might surprise some… the ‘exit strategy’ conversation. Some, while still in their prime years, look ahead and recognize the sad reality of living in the United States. Elder abuse and financial exploitation of the elderly are on the increase. In Vermont, the backlog of cases means that many will die before their case gets to the top of the pile. A law suit has been filed. “Vulnerable adults are people incapable of protecting themselves from the nephew who steals the Social Security check or the caregiver who leaves the woman with physical and cognitive limitations sitting in her feces,” said Barbara Prine of the Disability Law Project. For many, there will be no justice.

The prospect of inadequate health care, loss of the family home due to medical bills, and isolation all contribute to a distrust of the future. Add to that, the sometimes not too subtle message, that ‘old people’ are using up too much of medical resources and thus ‘stealing’ from their grandchildren. The guilt trip this places on the elderly is very painful. Not only the elderly, but also the disabled and those who need ongoing medical care, are marginalized in our culture. While having safe conversations, some admit that they are prepared. They have a plan for self-authorization when the time comes – before it is too late to take the necessary action.

This conversation is often with healthy, emotionally stable, middle aged people, living at home with their families. For one, money was the big issue. We have all seen families impoverished with health care expense. For another, in a nursing home, it was the poor quality of care he was receiving. He did not have a terminal illness, but he actively searched for a doctor who would assist him in suicide. He was not successful in finding one. He needed an advocate so that his quality of life could be improved. My friend did not need some exotic expensive medical procedure that could not be provided. All he needed was a compassionate humanitarian to come forward.

And then there is the man in Wayne, New Jersey. He was found dead in his home after being dead for a year. Maybe his life could have been saved by an advocate.

ROSEMARIE JACKOWSKI

Rosemarie Jackowski is an advocacy journalist and peace activist. She is author of BANNED IN VERMONT.

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