Tag Archives: palliative care

“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?

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.