Tag Archives: healthcare

NJ Senator Cory Booker, “Town Hall” Meeting, June 11, 2020 – Race in America #2

This was a Zoom gathering, and I was one of about 1500 participants. Senator Booker began by announcing that “the press” was not welcome. I was surprised. There’s no way a meeting that size could be “closed”, so I assume he was simply making it clear that he didn’t want to be quoted.

Questions were accepted both in advance of and during the meeting, but all were in writing and the moderator (his Deputy Campaign Manager) screened and read all questions. No one had an opportunity to throw either a softball or a curveball. I think the term is “on background”. Surely the press was listening, but they were not allowed any part in the event. OK with me.

A video of the event was later made available on line. I don’t think anything surprising or controversial was said. Booker has been in the public eye for a long time. He is suitably cautious.

Booker was born in 1969, after the murder of Dr. Martin Luther King. While admiring that advances of the 1960s Civil Rights Movement, he said it had “accepted a negative peace”. The (then common) assumption was that integration and the Civil Rights Act would greatly advance the interests and quality of life for African Americans.

Booker believes racism (as presently experienced) is systemic as well as personal.

Booker talked about America as two nations, with unequal access to healthcare, justice,  and a clean environment (as evidenced by rates of asthma, lead poisoning, etc.) He challenged the idea that the documented differences are really economic. Even controlling for income, health differentials confirm that the system is biased against non-Whites.

Booker says we are experiencing a time of opportunity. He encourages continued demonstrations. (He didn’t address preventing instigators from causing or exacerbating violence.) His sees his role as legislative and discussed the new legislation he (with other Senators) has written. One Republican Senator has expressed crossover support. Booker is uncertain if others can be recruited. The legislation calls for “substantive accountability” as follows:

  • ban on chokeholds and other lethal actions
  • data transparency and a national database about police infractions and penalties (so violent officers can’t just move to a new department) and
  • limits on police immunity, changing the standard from willfulness to recklessness.

Booker emphasized that it’s not the job of law enforcement to solve problems. That responsibility rests on government. Law enforcement does what government prescribes.

The next topic was incarceration. He describes our prisons as being full of addicts and non-violent offenders, many of whom are desperate for health care, especially mental health services. He says that there ARE solutions, it is a matter of how much we the American people are willing to struggle. Booker wants to end “mass” incarceration in this generation. It’s a big goal.

During the Q/A, topics included police in schools, systemic issues like the food and clothing industries, and voter suppression.

Asked how to keep protest going, he asked allies to stay engaged, to use every possible platform, to be creative and aggressive, and to be increasingly well informed. He advised reading The New Jim Crow and Just Mercy.

Considering he had been my Senator for about seven years, I’m a little late trying to get acquainted with Cory Booker. This was a reasonable, not particularly surprising, introduction. I’m optimistic about his leadership and concerned about the pitfalls and challenges of being a Senator at this time.

“Being Mortal – Medicine and What Matters in the End” by Atul Gawande AND “Five Wishes” by Aging With Dignity

Being Mortal: Medicine and What Matters in the End

Am I getting morbid? I read and think a good deal about aging and death. I’m 70 years old. People around me are coping with health problems. Help!

My first reaction to Being Mortal was that it’s a complete downer. Gawande shares stories from his own family. If a family that includes highly educated medical professionals suffers so much confusion and difficulty managing end-of-life care, what chance do the rest of us stand?

I suggest starting on Chapter 4 or 5, and taking the remainder according to your interests. To me, the second half of the book was generally more useful than the first half. That said, this book (published in 2014) is a thoughtful contribution to the ongoing conversation about aging and death in America. I recommend it highly.

Gawande emphasizes that it’s not only the patient who benefits from advance planning. The course of a person’s last days or weeks has major impact on the mental health of survivors, say six months later.

The take away message in Being Mortal is buried on Chapter 6 (Letting Go), on page 172. HOPE IS NOT A PLAN.

We all hope to die at home, surrounded by our loved ones. We hope for dignity and freedom from pain. Our chance of getting this positive end-of-life experience is small. Most Americans die in hospitals or nursing homes. If that’s my fate, I want to know everything I can do in order to have some control over what happens, to “do it my way”.

Five Wishes is a form (more of a workbook) that you can fill out so that your loved ones know what you want. Any one of us may have intervals (possibly temporary) when we can’t make our own medical decisions. Families are often faced with weighty decisions. Family members may disagree about treatment. Five Wishes won’t solve all of this, but it can help.

So, I’m not “being morbid”. I’m trying, in my own way, to do some planning, to lay some groundwork, to make my future easier and more positive, and to ease my loved ones’ burdens when I die. That’s all. I feel good about it.

“A Beginner’s Guide to the End – Practical Advice for Living Life and Facing Death” by BJ Miller and S Berger

A Beginner's Guide to the End: Practical Advice for Living Life and Facing Death

[480 pages plus resources, notes and index, published 2019 by Simmon and Schuster. TED talk available.]

I didn’t finish reading this book, but I have to return it to the Library because there is a “Hold” on it. Good! Someone else is interested in this topic.

It’s difficult to talk about death. Even language becomes a problem. Euphemisms abound. The one I try hardest to avoid is to say that I “lost” someone. No! I didn’t “lose” my mother! She was not misplaced. She DIED, despite good care and strong family support.

It’s easy to be confused and overwhelmed when a loved one is dying. The time to read and plan is NOW, before a crisis hits. Like many self help books, this one begins with the authors’ accounts of their experiences with the topic at hand. Miller survived electrocution, and Berger helped care for her dying father for several years.

Chapter 1 (“Don’t Leave a Mess”) resonates with me and most of my friends. We are trying to get rid of stuff! Sometimes I envy people who have moved every 5 years. Surely they are doing better than I am at downsizing. This book also discusses the psychological messes some of us carry around.

Chapter 13 (“Hospital Hacks”) is for everyone, but especially those with little or no experience with contemporary hospitals. Everything changes rapidly in the medical field.

The authors describe their book as being for

  • Anyone with a serious diagnosis
  • Anyone who loves a person who is aging
  • Anyone who wants to make his or her exit easier on their family
  • Those who want to make the most of life NOW

Pretty much all of us, right?

“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.

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.