Eric Piehl comments on caring for a loved-one whose mind and/or body is falling apart

Relationships with anyone Relationships with doctors

Desires … … leading to Care Systems
Closing phase of life

Introduction

If, three years from now, you share responsibility for a loved-on whose mind and/or body is falling apart, you will wish that today you had started to learn about that.

In 2022, the current state-of-the-art is the book Being Mortal: Medicine and What Matters in the End by Dr Atul Gawande.
◦ The book is about our struggle to cope with the constraints of human biology. Where our current medical power to control that is finite.

This article is basically my notes from this book. [Notes from me alone appear below in square brackets.]

Perhaps someday, there will be better materials. But today, this is what I know:

A great introduction is PBS program Frontline season 2015 episode 6 ▶︎ "Being Mortal." For full effect, select the video link, then icons ⤢ fullscreen, ㏄ captions=On, and ▶︎ Play.
For the full treatment, read or 👂︎ listen to the book. Being Mortal: Medicine and What Matters in the End by Dr Atul Gawande.
From my local library network website, I requested the 2014 edition be sent ("reserved") to my local branch for pickup, both:
◦ On 📚︎ paper. I found this almost impossible to read.
◦ On CDs in 🔊︎ audio. I ripped them onto my computer, and copied to a flash-drive for our car. I found this easier to listen to that to read. Not easy; barely possible.
Perhaps start some conversations with people you know. Starting too early is way better than starting too late.

Terminology

ADL Activities of Daily Living:

Take a bath or shower without help.
Use the toilet by yourself.
Dress and undress without help.
Shave, comb your hair, and brush teeth on your own.
Get in and out of bed or a chair without help.
Feed yourself without help.

[Seems to not include babies nor toddlers. A family member is barely holding onto these, handling the last item for only two kinds of food.]

IADL Instrumental Activities of Daily Living:

Use the phone, including answering and making calls.
Shop for groceries on your own.
Plan, heat, and serve your own meals.
Manage your medicines, including refilling them when needed, and taking them correctly.
Clean your house or apartment.
Get around on your own, by car, taxi, or public transportation.
Manage money and pay bills.

[Seems to include most adults. Tweens, teens, and 20-somethings are picking up these skills.]

Relationships with anyone

Really 👂︎ listen to people:

Sit facing your patient/customer/student, with 👀︎ your eyes on their eye-level, directly in front of them.
[Set down 📱︎ your phone, and] turn your seat away from 💻︎ your computer.
Listen to your person.
In America's Midwest, wait a second after people finish before you talk, to ensure they are truly finished.

Relationships with doctors

Relationships between doctors and patients [parents and children?]:

Doctor Paternalistic (Priestly / Commander / Doctor-Knows-Best) model:
◦ The original model.
◦ Tells patient only what they need to know.
◦ Works well only for vulnerable patients: frail, poor, elderly, anyone who tends to do what they are told.
◦ For reasonably-intelligent, reasonably-educated, reasonably-connected patients, we eventually invented …
Doctor Informative (Technician) model:
◦ Tell facts and figures, patient decides everything.
◦ Can work well if choices are clear, tradeoffs are straightforward, patients are informed and have clear preferences.
◦ But patients want more than information and control, they also want guidance. So we eventually invented …
Doctor Interpretive (Shared-Decision-Making / Counselor / Contractor) model:
◦ Ask, "What is most important to you?" and "What are your worries?"
◦ Then tell patient what they know, and guide them as to which options will best reach our goals.

To do this, if you are position of expertise, and need someone to talk about an uncomfortable (but important topic), say:
◦ I am worried.
   Pause, pause, then say what you are worried about.
◦ Ask. Tell. Ask.
   Ask the other what they want to know.
   Tell the other what you know of the subject.
   Ask the other what they understood of that.
◦ What are your biggest fears and concerns?
◦ What goals are most important to you?
◦ What tradeoffs are you willing to make?
◦ What tradeoffs are you not willing to make?

Questions may come from fear – answer them.

Find out wherefrom comes that fear, or what it is that they really want, and deal with that.

The job of doctors is to enable wellbeing, where wellbeing is about whatever reasons that person wishes to be alive, at whatever stage of life that person happens to be, at that time.

What is your understanding of your current situation?
What are your fears?
Hopes?
Tradeoffs you are willing to make?
Not willing to make?
Based on that understanding, what shall we do now?

Desires …

Socioemotional selectivity theory:

Young healthy stable people:
◦ Focus on long-term achievement, creativity, or potential new friendships.
Old, ill, and people about to-move:
◦ Narrow their focus to here and now – the people and experiences near us.

Terminally-ill people want to:

Avoid pain and suffering.
[Keep in mind Peak-End Rule of remembering pain and joy.]
Strengthen relationships with family and friends.
Be mentally aware.
Not be a burden on others.
Achieve a sense that their life is complete.
Being happy.

Thus, we attempted to create care systems that lets people do this …

… leading to Care Systems

Standard medical care treatment priority:

Extend life.
Sacrifice the quality of your existence now (e.g., with surgery, chemotherapy, or ICU),
for the chance of
gaining 📅︎ good-quality time later.

Hospice treatment priority:

Help someone with a fatal illness to have the fullest possible life right now.
In terminal illness, that means focusing on:
◦ Freedom from pain and discomfort.
[Keep in mind Peak-End Rule of remembering pain and joy.]
◦ Maintain mental awareness.
◦ Getting out with family as practical.
◦ Being happy.

Job of any doctor [or 3-Stage Retirement Village 3SRV ] is to:

Support quality of life:
As much freedom from ravages of disease as possible.
Retention of enough function for active engagement in the world.

Three Plagues of Nursing Home Existence:

Boredom.
Loneliness.
Helplessness.

Let's try to fix that. Bring in life: green plants in every room, garden, animals.

Eating alone is not very stimulating.

The chance to shape one's story is essential to sustaining meaning in life.

Closing phase of life

Remember the narrowing focus, to here and now – the people and experiences near us.

A mounting series of crises, from which medicine can offer only temporary rescue.

ODTAA One Damn Thing After Another.

[With 📱︎☎ 911, or] in the 🏥︎ ER/ED or hospital, you may lose all control over your care:

Terminally-ill cancer patients who had been:
◦ shocked/defibrillated or given chest compressions,
◦ put on mechanical ventilator, or
◦ admitted near-death to ICU,
had ⚠︎ substantially-worse quality-of life in their 📅︎ last week of life.
And 📅︎ six months after death, their caregivers were ⚠︎ much more likely to suffer major depression.

Review sections on Hospice treatment priorities ↑ above, and Lessons learned ↓ below.

Lessons learned

… from ideas in this book

[ 📅︎ Way ahead of time, we should:

Create good Health Care Power of Attorney, DNR, POLST, and/or other written directives, based on input from the subject and any advisors and stakeholders (spouse, doctor, kids, etc.).
Store at your 🏥︎ most-likely healthcare provider or hospital.
Store in a Vial of Life.
Ensure that 👪︎ any relatives likely to be there near the end have these documents, and are mentally prepared to follow through on these wishes.]

… from other sources

[Do not fear the ▦ mediset, which I prefer to call a pill-sorter. Starting too early is way better than starting too late.

Useful whenever you are taking multiple ℞ and/or non-prescription (OTC) drugs or supplements, especially if you take some in the morning and some at night.
In my pill-sorter, I combine both ℞ and 💊︎ non-prescription items. (Other people keep theirs separate.)
In fact, most of my pills are non-prescription: vitamin-D, allergy-pill, and such.
But they total enough to be worth filling my pill-sorter once a month, versus pulling a handful of bottles out of the cabinet each day.
Improves compliance, too!
My set has 1 hockey puck/day, each puck with 2 chambers (morning and night), 28 pucks, fitting in a 28-day carrier tray.
◦ But I later saw a better set, with 1 big popsicle stick/day, each stick with 2 chambers (AM and PM), 32 sticks, fitting in a 32-day carrier tray.
More compact, and your pill-sorting process stays in phase if you receive refills every 30 days.
With either kit, you can fill it periodically, leave the carrier tray in a drawer, putting out just the one daily puck/stick somewhere noticeable — perhaps by your toothbrush.
Other sets come with 1 or 4 chamber per day. (Two chambers/day works for me, at this stage.)
Get whatever kit works for you and your situation.]

[Do not fear the walker. They are terrific. Starting too early is way better than starting too late.

They prevent falls!
◦ A relative uses a walker not so much for physical support, but to keep upright and prevent falls — his or her eyes have declined a lot. For single-room walks, and often next-room jaunts, this relative bypasses the walker. But for longer jaunts, or if carrying a package down the hall, other floors, etc., this relative always goes with the walker.
These walkers are sometimes called an "upright walker," which is a terrible name, as we will see below.
Actually, forget the walker. What my relative has is actually a rollator, with four large wheels, two with brakes, controlled by hand-levers with three positions:
◦ (up) brakes on temporality — I want to stop now;
◦ (center) brakes off — I want to roll now; and
◦ (down) brakes on and set on (staying on until later released). Nice!
Besides, they have a shopping basket or bag that holds what you need: the package you just picked up, and your every-day carry EDC: wallet, flashlight, magnifier, sweater, whatever.
◦ Often underneath a padded platform that can be used as a seat — if you get tired, just set the brakes, turn around, and sit down!
Again, I have a relative with a rollator, and it works very well. But after seeing a new design in use, I greatly prefer this new design.
Generically called an upright rollator; the brand I saw was UPWalker.
◦ You keep your spine vertical (no slouching over), and your keep your wrist at a natural angle (not tilted over).
◦ When I need a rollator, I will have my eye on an UPWalker Large frame, with cupholder. Or whatever the next new thing is then.]

[We are all only temporarily-abled.

— Source unknown, I heard it a long time ago. Although on 2018-10-02, I heard Dr. Siddhartha Mukherjee say that ⚕︎ doctors understand very well that they will soon be on the other side of the exam table.]

[Lesson Learned: Design everything for your future self:
◦ Build your websites with text large-enough, contrast high-enough, and all that accessibility stuff.
◦ Design/acquire/modify your 🏠︎ home with your ♿ future abilities and limitations in mind.
◦ Etc.]

[Search carefully for 3SRVs. TODO: write this section.]

Random statistics …

63% of doctors overestimate future survival time, by an average of 530%! Only 17% of doctors underestimate future survival time.

Risk factors for falling (and breaking your hip):

Poor balance.
Taking more than four prescriptions ℞💊︎.
Muscle weakness.
None of these: 12% chance of falling in a year.
All three of these: almost 100% chance.

Cancer costs are U-shaped:

High initial costs. [OK.]
If treatment works, tapers to US$2k/year. [Excellent.]
Last year costs average US$94,000. [May be useless or less-than-useless.]

25% of Medicare spending is for 5% of patients, in their final year of life.

Most of that goes to last few months of life, where it gives little apparent benefit.

More than half of those living in 3-Stage Retirement Villages 3SRVs run through their savings.

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