Thursday, June 20, 2019

The Art of Dying Well

Book: The Art of Dying Well: A Practical Guide to a Good End of Life
Basic Information : Synopsis : Expectations : Thoughts : Evaluation :  New Words : Book References : Good Quotes : Table of Contents : References

Basic Information:

Author: Katy Butler
Edition: epub on Overdrive from the San Francisco Public Library
Publisher: Scribner
ISBN: 1501135317 (ISBN13: 9781501135316)
Start Date: May 29, 2019
Read Date: June 20, 2019
288 pages
Genre: Essay, Personal Growth, Death
Language Warning: None
Rated Overall: 5 out of 5


Synopsis (Caution: Spoiler Alert-Jump to Thoughts):
Katy Butler takes the reader through options in the dying process. She emphasises that it is better to die in peace and comfort than trying to prolong a life which may or may not be livable after treatment. She labels this as The Lost Art of Dying. She talks about how we are geared to prolonging life rather than evaluating the results of prolonging the life. Is the life remaining going to be better by living it fuller rather than treating a progressive illness?

She goes through the steps of dying, starting with just growing old and what one should be doing at each step. As we age, we slow down. We lose balance. We become aware of our mortality and how frail our bodies are becoming.

Then there is the active preparations for death to actually dying.


Expectations:
  • Recommendation: Mel
  • When: March 6, 2019
  • Date Became Aware of Book: March 6, 2019-From a column Katy Butler wrote
  • How come do I want to read this book: There are several things which I have been thinking about after my parents deaths over the past few years.
  • What do I think I will get out of it? I am hoping that the book will help me to think through what I want in my own death.


Thoughts:

Introduction: The Lost Art of Dying
  • Our health system rewards cure rather than care. This leads the system in making us a cog than a person.
  • Contemplating our own vulnerability and mortality as we age leads us to be better prepared as the time draws closer and to be better satisfied with our care.
  • Death cafe meetups
  • Interesting distinction. She says that perfection is not a goal of art; it is an ambition of technology and science. She goes on and talks about how art is formed-through the use of imperfect materials which are found. In many ways, this is true of the book. Make use of the resources you have if you are dying.

Chapter 1: Resilience
Stage: This stage is when you still have physical capabilities. Usually in your 50's and 60's and early 70's. Being active can help extended this time. You still have the capabilities to reverse health problems.
Actions: Inventory your condition, build up reserves and make a determination of weaknesses.
Death during this stage is usually long and painful. But the best thing you can do is to walk energetically every day. Be active physically in whatever way you enjoy. As you get physically weakened, adapt.
While medical innovation can offer benefits, there are risks. You must weigh these risks, including what is not known.
High priority-guard your brain. It is here which you will be able to continue to function independently.
Use a mutual support system-neighbors helping and checking in on other neighbors.
Elders worthy of emulation know they will soon lose life-amd so they generously give it away to those around them. Doug von Koss
Fill out the Advanced Health Care Directive. Nothing is more profound than contemplating your feelings about how you want to be treated when you are dying... Butler goes on and says that it is an act of kindness to provide clear guidance of your wishes to those around you concerning what you want to happen to your body. Also it is an act of personal power to provide this specificity.
Cruzan decision (lookup what this is) gave four things a lay person has concerning patient autonomy:
  • the right to determine medical treatment
  • treat patients justly
  • benefit the patient
  • do not harm the patient
Two documents which enable a person to express their will are:
  • Durable Power of Attorney for Health Care-allows a proxy to make the decisions in cases where you are not able to
  • Living Will or Advance Directive. A POLST is a stricter version of this
Where to get theses?
  • Health Plan (Kaiser)
  • Mydirectives.com
  • Also see aging with diginity.org – pamphlet called Five Wishes. Will cost $5
All will help you imaging “a good death”. Some questions/statements would include:
  • My wish for how comfortable I want to be...
  • My wish for how I want people to treat me....
  • My wish for what I want my loved ones to know...

Butler states that the forms and all are stimuli for conversations a person should have with their loved ones. The idea is that there should be consensus about what the person who is dying wants and what is acceptable for those who need to make voice heard about what I want.
The first two thirds of life deals with what do I want to be, building and achieving status. The last third of life deals with what meaning does/did my life have-giving back both materially and in what has been learned. Reflection is part of this.
Ways to prepare:
  • Build physical, social and spiritual reserves. Plan for a good death.
  • Get at least half an hour of exercise a day-Make it pleasurable
  • Get support for any issues you have-diabetes, …
  • Find health care that emphasizes prevention and is accessible as mobility is less.
  • Get to know neighbors, cultivate friendships with younger people, help those less able than yourself, mentor
  • Pick a medical advocate. Talk openly about what I want done.
  • Sign advance heath care directives
  • Prepare for disability. Authorize access to medical records.
  • Get family on same page as myself
  • Have a quiet time for at least half an hour each day.

Chapter 2: Slowing Down
More felt than seen. The emphasis is to continue with the changes from the previous chapter. It will higher your plateau for living.
Simplify your routines. Understand the limits of medicine and the medical profession. Come up with a coordination of medical profession-I may already have that with Kaiser.
The key thing is to do things which will help you maintain independence:
  • reduce financial accounts
  • bill pay on autopay
  • declutter
  • smaller house and yard
  • Keep tasks manageable
  • Conserve your personal energy as that will start running out.
  • Maintain mental clarity as this will start decreasing
  • Simplify medical
Slow medicine-not a single silver bullet, but tackle multiple issues.
Butler recommends that Kaiser has a good set of senior advantage offerings.
Ways to prepare:
  • Simplify your life,
  • manage your energy levels
  • do what matters to you.
  • Enroll in an HMO or Medical Advantage plan
  • Medication review with doctor once a year
  • Guard your brain. Stay away from anticholinergics (dementia risk)
    • Also things which will increase the likelihood of falling
    • See American Geriatrics Society's “Beers List”
  • Question and eliminate unnecessary screenings-see Choose Wisely website
  • Improvise rites of passage-peace with loss
Chapter 3: Adaptation
You know you are not getting better, you need aids to do things, assistance for normal life stuff.
Butler favors not as much drugs and invasive procedures, but more on friendship with others and alternative care such as social workers and therapists.
Also the questions are slightly, but significantly different: What matters to you? Rather han What’s the matter with you? Emphasis on keeping meaning for you rather than repairing you.
FINDING ALLIES IN OCCUPATIONAL AND PHYSICAL THERAPY
Stay active and well socialized to keep functional, both physically and mentally.
Keep from falling:
  • Get cataract surgery if needed.
  • Give up progressive lenses as you age.
  • Asses home for things which will cause you to fall
  • Make sure your shoes are in good shape
People deny themselves pleasure when they become disabled. Adjust instead.

Joy and gratitude is essential for well-being. Be passionate about something outside of yourself.

Be able to look back at your life and not regret it.
Ways to prepare:
  • Plan financially for possible disabilities
  • Do not just rely on family. Use hired help or community resources
  • Use a physical, speech and/or occupational therapist.
  • Prevent falls
  • Review medications
Chapter 4: Awareness of Mortality
Addressed to those who:
  • If you are serious or terminally ill.
  • A vital organ is slowly failing
  • Early stages of an incurable disease.
  • Doctors do not give a good prognosis-or even none.
  • Terms such as chronic, progressive, serious, advanced, late or end stage is used
  • Doctors ask about your goals of care-what matters to you.
  • Gut feeling that the next medical appointment will divide your life into before and after.
Length of life is not the only metric of quality of care.
Accepting death, while continuing to live as much as you can.
Have your doctor sketch out how they think your life will progress. Common ones include:
  • Niagara Falls
  • Looping Decline
  • Stair Step
  • Dwindles
Palliative care is not hospice. But emphasis relieving suffering and improving function. See web site: getpalliativecare.org
Address your fears, ask your doctor:
  • What is it like to die from my condition?
  • Will you still be my doctor if I decide to opt for strictly palliative care?
  • When do patients with my condition benefit most from enrolling into hospice care?
Think through how your treatment matches your objectives. Your doctor has five traditional duties. You need to understand how the treatment you want and are receiving fit in:
  • To prevent disease
  • To restore functioning
  • To prolong life
  • To relieve suffering
  • To attend the dying
When you have a short time to live, energy is the most precious commodity. How do you want to spend it?
Don’t postpone joy
Ways to Prepare:
  • Pause before making major medical decisions
  • Join a support group
  • Find a palliative care doctor/nurse
Ask your doctor questions:
  • Can you sketch the usual trajectory of my illness
  • What do you hope this treatment will do for me?
  • How will I feel day to day?
  • What alternatives and what are the pro's and con’s?
  • What is it like to die with my condition? How will medicines affect this?
  • Will you still be my doctor if I opt for palliative care?
  • When do patients with my condition benefit the most from hospice care?
Ask Yourself:
  • What activities or capacities make my life worth living?
  • What are my fears and regrets?
  • Given that time is short, how do I want to spend it?
Chapter 5: House of Cards
Addressed to those who:
  • Includes caregivers, not only those who are experiencing this decline
  • No longer have a zest for living-the dwindles. Loss of:
    • Appetite
    • Energy
    • Investment in relationships
  • Takes more than 20 seconds to get up out of a chair, walk 10’ and back and sit down.
  • Lost 10 lbs or 10% of body weight in past year
  • Troubles walking half a mile, unscrew jar lid, pick up a chair.
  • To get up, you push with both hands
  • You fall easily or use a walker or need help balancing
  • 10 hours or more a day of sleep
  • You have caregivers or require an assisted living situation
  • Gone to ER at least once this year and come back worse, rather than better
  • No longer forgetting names, but also forgetting way home
More likely to suffer complications from hospital stays. Each day an older person lies in bed, you lose about 5% of your muscle mass.
Good medical care at this stage includes:
  • Physician house call service
  • Focus on comfort
  • Upgrading advanced health care directives
  • Considering what a peaceful death will look like
  • Working on reducing hospital visits, including ER.
  • Considering what medicines are appropriate for this stage of life.
Some things in life cannot be fixed. They can only be carried. Meghan Devine
About 25% of people in their 70’s are considered frail; 40% in their 80’s.
Upgrade the Advanced care Directive to a POLST
Understanding your situation will lead to uncertainty and issues with established protocols. Uncertainty is not a temporary nuisance which can be chased away through learning the rules, or surrendering to expert advice, or just doing what others do. Instead it is a permanent condition of life… To be responsible does not mean to follow the rules. It may often require us to disregard the rules or to act in ways the rules do not warrant. Zygmunt Bauman
Her belief in God is a loving God who does not inflict suffering, at least as far as technology. (Later it looks more like a New Age type of belief, not Christian).
At times caregivers need to be an advocate, a warrior for the person who is dying to have their wishes honored.
When the prognosis looks closer to terminal, ask for comfort care. This is saying yes to making the patient feel comfortable, eliminating or reducing pain or distress. Make sure only essential doctor appoints are made.
Ways to Prepare:
  • Recognize frailty and protect against the ramifications, such as falling
  • Avoid hospitalization. Do home-based care
  • Get a POLST signed with a DNR.
  • Halt dialysis
  • Relax dietary and other restrictions. Enjoy the remaining time.

Chapter 6: Preparing for a Good Death
In death, you die alone, but you can and should have others with you till the end. It is easier with others. This does require the acceptance of a coming death.
Look for hospices between 9-15 patients/nurse-the lower the better. Go to Medicare’s hospice compare page Do site visits to better understand the facility and how they operate.
There are three things people want know/express before they die:
  • Regrets to express and want forgiveness
  • Fear of being forgotten-they want to be remembered.
  • Lives had meaning.
Ask yourself:
  • What stands in the way of dying in peace?
  • What do you regret?
  • What does a good death mean to me?
  • How do people with my illness die?
  • What can be done to ease the symptoms?
  • Are there certain people whom you do not want to see?
  • How might your survivors feel better once you are gone?
A “to do” list from who gets what to what do you want to talk about is helpful. They generally fall into three categories:
  • Telling your story
  • Arranging practicalities
  • Interpersonal work at life’s end
People die as they’ve lived. Judith Redwing Keyssar
Many people do five emotional tasks at the end of life:
  • Please forgive me
  • I forgive you
  • Thank you
  • I love you
  • Goodbye
Ways to Prepare:
  • Call a hospice for an informal meeting
  • Consider the five emotional tasks
  • Enlarge your support
Chapter 7: Active Dying
Useful if:
  • Stop eating
  • Thoughts of packing up and going home, or moving to a higher floor
  • See, dreams or speaks of the dead
  • Talks of wanting to join dead loved ones
  • Spirit guides
  • Cannot get out of bed, needs help to go to the bathroom or uses a diaper
  • I am dying or there is not much time
  • Brief spurt of energy, joy, or exuberance. May last hours or even days
  • Withdrawls, naps, does not speak much, and/or keeps keyes closed.
If in a hospital or a medical facility, look for the following signs, as medical stuff may disguise impending death:
  • ICU with stage four cancer or infection shutting down whole body. Also prior ICU visits
  • ICU doctors argue about treatment or multiple organ systems failure
  • Doctor suggests meeting with palliative care or hospice people.
Modern death involves three things:
  • Physical comfort
  • Human connection
  • Pain control
Modern times, death is more hidden, so we are not exposed to it and do not recognize it. The goal is not a “perfect” death, but one where the passage is kept comfortable and human. Dying is not an emergency, but a time to recognize the human being and who they are. Express your care for the person.
Being able to help care for a person relieves some of the guilt of the thought, did I do enough?
There needs to be a team of people helping you. But it also takes a strong person to coordinate and be there.
Hospice at home may not be for everyone. There are difficult situations. Or times when you cannot have adequate care. She does think that if you have the resources, dying at home is the better way to die.
Plan for some basic needs if you are doing in home hospice:
  • Food and comfort for those who are at the home
    • Takeout menus or food from friends
  • Medical care which supports the dying (hospice care n home service or palliative care)
  • Prescriptions for pain/anxiety management
  • Calmness
  • Reading material or puzzles, games, music
  • Whiteboard/notepad for messages
  • Documents detailing medical wishes and conditions
Equipment might be:
  • Hospital bed
  • Wheelchair
  • Bedside commode
  • Paper towels
  • Dark cotton towels
  • Adult diapers
  • Garbage bags
  • Lavender or eucalyptus spritzer-there are smells with the dying
  • Charcoal briquettes under the bed to absorb odors
No right way to die. The dying will feel different emotions. They may want to talk about deep, personal stuff, or watch a TV show or sports. Sometimes a person will “hold on” as long as people are in the room. Step out occasionally.
The dying will probably be able to hear you. So it is OK to speak to them.
Ways to Prepare:
  • Prepare for the needs of the dying
  • Bring in hospice care if you can
  • Make pain management a priority
  • Alternative to 911 calls in a crisis
  • Get a DNR and POLST
  • Keep focused on what matters
  • Hospitals
    • Have unnecessary medical equipment, beepers, monitors, … removed
    • Ask for comfort care only-no blood draws, diagnostic tests or vital signs.
      • Pan management only
    • Claim the space by what the person wants.
    • Recite poems or prayers, whatever will comfort the person and yourself.
      • Anglican Prayer for the Time of Death
Conclusion: Toward a New Art of Dying
Dying can be ugly, and families and friends thirst for beauty. A good death is judged not only by the peace and comfort of the dying person, but by the memories that inhabit, or later haunt, those who survive it.


Evaluation:

 Let me start by saying, I am not dying, at least not any more than anybody else is. So why am I interested in this book. First, my parents died in the past five years, so death has been on my mind. Also my wife’s cousin recommended an article by the author, Katy Butler.

Is this book good? Yes. It is practical with lots of bullet point recommendations, along with many stories of those who faced death in various circumstances. Having said that, who is this book good for? It is aimed at those who are pondering what kind of death they would like to have. Those in their 60’s is the preferable target audience. Does Butler have any special leanings? Yes. She thinks that as we get older, medical procedures are too invasive and not particularly effective in improving a person’s quality of life; medicine can cause its own problems with confusion and balance; home hospice is the best place to die.

This is a book which is a good guide to ponder how you want to die and how to prepare for death. Butler’s goal is to prolong your ability to enjoy your life, even as you age. As part of this, she gives you an understanding of how to increase your time of health. This is a theme of the book. Eventually you will have a choice-lengthen your life by medical means or learn to enjoy your life as your body declines. Her preference is to continue to enjoy life rather than be inflected with medical procedures.

Either way you choose, this is a book which will cause you to think about your mortality. It gives you the tools to take charge of your life and death.


New Words:
  • joie de vivre (French): joy of living
Book References:
  • The Art of Dying by an anonymous Catholic monk
  • The Way of Dying Well by an Angleican
  • Piety Promoted: In Brief Memorials and Dying Expressions of Some of the Society of Friends, Commonly Called Quakers
  • Being Mortal by Atul Gawande
  • Natural Causes by Barbara Ehrenreich
  • When Breath Becomes Air by Paul Kalanthi
  • History of Palliative Care by Michael Stolberg
  • My mother, Your Mother: Embracing “Slow Medicine,” The Compassionate Approach to Caring for Your Aging Loved Ones by Dennis McCullough, MD
  • How to Protect Your Family Assets from Devastating Nursing Home Costs: Medicaid Secrets by Gavriel Heiser.
  • This Chair Rocks by Ashton Applewhite
  • The Emperor of All Maladies by Siddhartha Mukherjee
  • Hard Choices for Loving People by Hank Dunn
  • Choosing to Die by Phyllis Shacter
  • Final Exit by Derek Humphry
  • The Story of Babar: The Little Elephant by Jean de Brunhoff
  • Sacred Dying by Megory Anderson
  • Last Acts of Kindness by Judith Redwing Keyssar

Good Quotes:
    • First Line: To our ancestors, death was no secret.
    • Last Line: And then I urge you to take your voice out into the wider world, and keep telling your stories.
    • Elders worthy of emulation know they will soon lose life-and so they generously give it away to those around them. Doug von Koss as quoted in chapter one.
    • Nothing is more profound than contemplating your feelings about how you want to be treated when you are dying… Chapter One
    • Don’t postpone joy. Chp 4
    • Some things in life cannot be fixed. They can only be carried. Meghan Devine, in It's OK That You're Not OK: Meeting Grief and Loss in a Culture That Doesn't Understand
    • People die as they’ve lived. Judith Redwing Keyssar in Last Acts of Kindness
      Table of Contents:
      • Introduction: The Lost Art of Dying
      • Chapter 1: Resilence
      • Chapter 2: Slowing Down
      • Chapter 3: Adaption
      • Chapter 4: Awareness of Mortality
      • Chapter 5: House of Cards
      • Chapter 6: Preparing for a Good Death
      • Chapter 7: Active Dying
      • Conclusion: Toward a New Art of Dying

      References:
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