Tag Archives: end of life care

“Finish Strong – Putting YOUR Priorities First at Life’s End” by Barbara Coombs Lee

This is an excellent book and I’ve already sent a copy to a family member who is dealing with the very serious illness of her husband. I think all my “baby boomer” contemporaries need to read it. I’m tired of hearing people say it’s “too soon” to think about old age. “Later” has a way of arriving unannounced.

One of the best things about this book is that it critiques the use of “advanced directives” and acknowledges how often they are ignored. I think my father was resuscitated three times against orders, in the last two weeks of his life (1997). The eventual decision to switch to “comfort care” made his last hours peaceful.

Ms. Lee’s discussion of hospice care (at home or elsewhere) is severely at odds with my experience and perception. Her experience is both longer and broader than mine. Maybe at some time (decades ago?) and some place (not New Jersey), hospice provided the idyllic and thoughtful care she describes. But MY “here-and-now” observation suggests that hospice care has been completely commercialized and is just one more service provided by giant “health care” corporations determined to squeeze every possible dollar out of sick people and their insurance carriers.

I could write an extensive rant, but I won’t do it here. I do wish to note that two of my close friends, whose experience with hospice is more extensive than mine and who hold relevant professional credentials, agree with my opinion. One of these individuals is a licensed clinical social worker, the other a hospice chaplain.

Another substantive concern of mine is that Ms. Coombs seems to assume that one’s PCP (primary care physician) will be involved at all stages of illness and death. It seems to me that this is rapidly becoming less likely. Even among people with insurance, some simply don’t choose a PCP, relying on urgent care instead. My insurance company encourages use of urgent care for things I think of as primary care issues, so my number of PCP visits (and opportunities for discussion) may drop.

To complicate matters, I’m running through PCPs like Kleenex. Four in five years, not my choice…  Is this happening everywhere? Within the primary care practice I use, even rather serious illness may be handled by a nurse practitioner. (I hope they show more longevity than physicians.) And, when one is hospitalized, visits by the PCP aren’t scheduled. I understand a specialist called a “hospitalist” is in charge. My observation (based on family experiences) is that often, NO ONE IS IN CHARGE.

Another good thing about this book is that it emphasizes values and spiritual considerations at the end of life.

Is this a depressing book? No! It’s full of practical suggestions, and offers hope that patients and their advocates can, with persistence, get more responsive care.

Medical Aid in Dying – Sad Victory

Another trip to Trenton. (See my posts of  February 12 and 21 of 2019.) On March 25, both the New Jersey Senate and Assembly voted on a bill to allow a doctor to prescribe lethal medication for self administration by a mentally competent adult having (in the opinion of two doctors) less than six months to live. Polls show that 60% of New Jersey residents want this change in our law.

How did I spend my day? I was one of perhaps 25 supporters working under the banner of a national organization called Compassion and Choices. We made our presence obvious by wearing the organization’s distinctive yellow t-shirts. Some of us carried signs.

Opponents to the legislation wore recognizable lapel badges. Who are they? (I can’t answer this in detail.) I think they are people who believe that medical science can control pain. Some are doctors. Some seem to be religiously/morally motivated – Catholics and (orthodox?) Jews. Most poignant, some are citizens with handicaps who fear that Aid in Dying will lead to involuntary euthanasia of people judged to be “defective”. It seems to me that this “slippery slope” argument requires very careful analysis, and the concerns of the handicapped must be scrupulously protected. In this territory, the public policy making is far from complete.

Initially we lurked in the crowded basement of the New Jersey State House Annex, wanting our support to be visible to the legislators. The noise and crowding were extreme. Sometimes the two sides of the Aid in Dying issue came face to face. I was walking up a ramp, supporting a lady much older and more frail than I am, both of us moving carefully. We came face to face with an opponent to our position, a huge man dressed in black whose argument consisted of “how can you possibly?…” and “every soul is sacred”. I slowed him slightly with “what about my right to make the decision to end my own pain?” or something like that. Then I handed him my one page statement (see previous post) and asked that he read it. The crowd pushed us apart.

Much was under consideration in Trenton on March 25…

  • medical marijuana
  • recreational marijuana
  • teachers’ benefits and salaries
  • high school football
  • driving rights?
  • dozens of obscure-to-me bills

We waited – in the corridor, the cafeteria, the two legislative chambers…

Compassion and Choices warned us that, in the legislative chambers, we would hear distressing statements, exaggerations, untruths… We were asked to stay calm and refrain from calling out (which violates the rules), although opponents might do so. Yes, all of that happened. It was hard. Procedural issues came up – we thought the Bill was tabled, which would have been bad, but suddenly it was back. Only one assembly person spoke with what I would call the “voice of reason”. I think almost all legislators were committed beforehand. And a few were waging a passionate battle in opposition.

After the vote, most of “the opposition” drifted away from us, but a young man took out his cell phone and announced that he wanted “pictures of the Nazis”. That’s what he called us. We tried to ignore him and shelter the woman he approached most closely, a fragile cancer patient. Somehow we all got out of there.

Looking at the smiles and high fives exchanged after the legislation passed first the Assembly and then the Senate, and at the pictures posted on social media, an observer think the pro-Aid in Dying group was happy about its victory. But underneath this was very profound sadness. Most of the supporters of Aid in Dying (based on my experience) are women who are or have been caregivers. In formal testimony, there were repeated references to “my husband”, “my mother”, “my sister”, “my best friend”. Most (but not all) of these loved ones suffered from cancer and experienced terrible pain. A few people were advocating on their own behalf, in anticipation of uncontrollable pain. Four (possibly more) members of our group are plainly seriously ill – three using oxygen, one in a wheel chair. They were among the more emotional of the participants. I talked with a composed and apparently healthy woman suffering from a rare genetic liver disorder. There is no treatment available. She is fortunate to even have a diagnosis. Her quality of life may deteriorate at any time. If that happens, she wants to choose the time of her own death.

I was relieved when the Governor signed the Bill into law. A few months will be required to set up regulations for implementation. How soon will this be an issue which is about ME? Or some dear friend? God grant me wisdom…

Why I Support Medical Aid in Dying

I went to Trenton on February 7, 2019, to support legislation that would, under certain conditions, permit a doctor to prescribe lethal medication for self administration by a mentally competent adult. Knowing testimony would be limited to two minutes, I wrote the following:

I am testifying in support of this legislation because of my experience at the bedsides of two dear friends, Carol Slocum who died of pancreatic cancer in 2010 and Mary Hunt who died of lung cancer in 2014. I regret to say that each of them suffered from severe pain.

What I saw led me to conclude that pain control is not an exact science and that the promise offered by hospice of a calm and painless death is an illusion. Medications and supportive services help some people, some of the time. High dose morphine controls pain at the expense of meaningful awareness. Drugged oblivion would not be my choice.

Mary Hunt wanted medical aid in dying and repeatedly expressed to me her anger and frustration that the laws of the State of New Jersey prevented her from having meaningful control over her impending, inevitable death.

I am currently blessed with good health, but I know how quickly that can be swept away. If I am ever as sick as my two friends were, I want the right to end my suffering. I would want to have a legally prescribed, lethal drug in my possession. I consider Aid in Dying for the Terminally Ill to be a compassionate and humane policy.

Alone in my car on the way to Trenton, the memory of other deaths intruded into my consciousness. FOUR MORE cancer deaths in the past decade, among my closest friends. Cancer of the lung, breast, uterus, ovaries. (Dozens, of course, if I draw a wider circle.)

It’s a wonder I even got to Trenton. I wanted to pull off the road and cry.

Among these six personally devastating deaths, what did I see? ONE case that I would characterize as a “good death”, the kind hospice hopes to provide – safety, comfort and loving company. Another was about 50% “good”. The others? All kinds of problems.

  • Isolation.
  • Hasty, inappropriate medical interventions.
  • Lack of support for both patient and family.
  • Pain.
  • Uncertainty.

MY SIX FRIENDS WERE MIDDLE/UPPER CLASS PEOPLE WITH GOOD HEALTH INSURANCE. Their families were reasonably sophisticated about hospitals and medical specialists.

I simply can’t imagine what it’s like for people with no insurance. Or no money. Or few friends. Or poor English.

I’m concerned about the emphasis on PAIN as a criterion for aid in dying. How much do I have to suffer for YOU (who oppose this legislation, and/or the State of New Jersey) to be comfortable with my decision to die?

What about my right to make the important decisions about my life? At what point should it be taken from me? Medically, our ability to keep people alive far outstrips our ability (and willingness) to support QUALITY of life.

Critique of a Public Hearing – NJ Senate Health and Human Services Committee – February 7, 2019

This isn’t my first such critique! Much lip service is paid to democracy, and we are all enjoined to be active citizens. Public hearings should be a constructive opportunity to influence policy, but too often they are regrettably mismanaged.

I’m pleased to report this hearing, which dealt with the difficult topic of medical aid in dying, was well organized. It began almost on time. The committee members made only brief introductory remarks.

All citizens and organizations that wished to be heard were required to sign up in advance. In some ways, I didn’t like the fact that a citizen was required to indicate “pro” or “con” at that stage, but the committee plainly intended to balance the remarks.

Speakers were seated at a table for four, facing the committee of seven members. The chairman

  • announced a strict limit of 2 minutes per speaker,
  • controlled who was permitted to speak and
  • intended for the hearing to last one hour.

Initially, four speakers were called in support of the proposed legislation. Then four opponents. Most of the early speakers were affiliated with organizations, generally as officers. They continued to alternate “pro” and “con” until a total of 24 speakers were heard. In three cases, committee members had questions for speakers, but these were brief. In one case, the issue was interpretation of data.

Next, the names and stances of all others who had requested to speak were read into the record. I don’t feel strongly about the fact that I was not called to testify. Other people defended my point of view.

The committee voted. I don’t think the outcome was a surprise. The committee approved the legislation to be sent to the State Senate and Assembly for vote.

I approve of the way the committee handled this hearing. My time was not wasted.

I regret to report that Trenton still looks and feels like a DMZ.

I haven’t told you my position. Stay tuned. It’s too important and too complicated for a quick review.

My Letter to the Editor – Death with Dignity Legislation in New Jersey

It must be at least five years since I have felt strongly enough about an issue to write a letter to the editor! My letter below was published today:

Press of Atlantic City – Voice of the People

04 Feb 2015

Approve bill to allow death with dignity:

The “Aid in Dying for the Terminally Ill” bill (S382) will be up for a state Senate vote soon. It would permit a terminally ill patient to self-administer medication to end life in a humane and dignified manner. Only adults of sound mind would qualify for access to this measure.

I’ve watched several friends die of cancer. It is clear to me that pain control is an inexact science. Sometimes it doesn’t work.

A close friend of mine died of lung cancer four months ago. She endured grueling treatments and exceeded the expected survival for her type of cancer by many months. A few weeks before her death, she told me she was ready to die and felt frustrated that New Jersey prohibited her from obtaining a lethal drug like those available in Oregon and Vermont.

I don’t want to end up dying slowly and in pain.

I support the right of the individual to make this intensely personal medical decision. I urge everyone to look at this legislation, decide what you want for yourself and loved ones and contact your state senator.