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

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 this material.

In 2023, the current state-of-the-art is the book Being Mortal:  Medicine and What Matters in the End by Dr Atul Gawande.

This book is about our struggle to cope with the constraints of human biology.
Where our current medical power to control human biology is finite.

This article is basically my notes from this book.

[ Notes from me alone appear in spaced-out, bold square brackets. ]

[ This book seems to be the opposite of the poem:
  Do not go gentle into that good night,
  Old age should burn and rave at close of day;
  Rage, rage against the dying of the light.
  …
      — "Do not go gentle into that good night" by Dylan Thomas.  ]

[ Or maybe this book is a compromise effort — an effort to:
  Do what we can,
  with what we have,
  where we are.
    — Teddy Roosevelt, 26th President of the 🇺🇸 USA, slightly reworded by me. ]

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, ㏄ Closed 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.  A very popular book, but I found this almost impossible to read.  Emotionally impossible?
    ◦  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.  If you are a for a copy.
  
  
• [ TODO:  Listen to podcast All There Is with
  Anderson Cooper.  ]
  
  
• Perhaps start some conversations with people you know.  Starting too early is way better than starting too late.

[ If you don't know where you're going, any road will take you there.

    — George Harrison. ]

Activities of Daily Living ADL

• 🛏⑁ Get in and out of bed or a chair without help. ^[1]
• 🚻︎ 🚽︎ Use the toilet by yourself.
• 🛀︎🚿︎  Take a bath or shower without help. ^[1]
• 🪒🪮🪥 Shave, comb your hair, and brush your teeth on your own.
• 👕︎  Dress and undress without help. ^[1]
• 🍽  Feed yourself without help.

[ Seems to not include babies nor toddlers. ]

Social Determinants of Health SDoH

1. [ 📈︎ Economic stability:
    • income (including eliminating poverty ),
    • job opportunities,
    • job security and working life conditions.
   
   
2. 🏛 Education:
    • access, affordable, of decent quality,
    • early childhood development,
    • language and literacy skills.
   
   
3. Healthcare:
    • access, affordable, of decent quality.
   
   
4. Neighborhood and Built Environment:
    • safe housing, transportation and neighborhoods;
    • ~polluted air, water, soil and housing;
    • access to nutritious foods (~ food insecurity);  and
    • access to physical activity opportunities.
   
   
5. Social protection and community context:
    • social inclusion, non-discrimination (~ racism, violence, structural conflict). ^{[2] [3] [4]}  ]

… ⚕︎ doctors

Relationships between ⚕︎ doctors and patients follow one of several models:

1. Doctor Paternalistic (Priestly / Parental / Commander / Doctor-Knows-Best) model:
     •  The original model.
     •  Makes decisions for the patient.
     •  Tells patient only what they need to know.
     •  Works well only for unconscious patients with no family member available, and for vulnerable patients — frail, poor, elderly, and anyone who tends to do what they are told.
     •  For reasonably-intelligent, reasonably-educated, reasonably-connected patients, we eventually invented …
   
   
2. Doctor Informative (Scientific / Engineering / Technician / Consumer) model:
     •  The doctor tells the patient facts and figures;  the patient decides everything.
     •  Can work well if (A) choices are clear, (B) tradeoffs are straightforward, and (C) the patient is informed and has clear preferences.
     •  But patients want more than information and control — we also want guidance.  So we eventually invented …
   
   
3. Doctor Interpretive (Shared-Decision-Making / Counselor / Contractor) model:
     •  Ask:
         ◦  "What is most important to you?" and
         ◦  "What are your worries?"
     •  Then:
         ◦  tell patient what you know, and
         ◦  guide them as to which options will best reach their 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 patient "What do you want to know?"
         ◦  Tell the other what you know of the subject.
         ◦  Ask the patient "What is your understanding 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?

[ Plus, expanding on Dr Gawande's discussion with the info in Four Models of the Physician-Patient Relationship   and The Four Models of the Physician-Patient Relationship. …

4. Doctor Deliberative (Collegial / Teacher / Friend) model:

And in table format: Table 1.  ⚕︎ Doctor Models. Doctor Model > Doctor Paternalistic
Priestly / Parental / Commander / Doctor-Knows-Best Doctor Informative
Scientific / Engineering Doctor Interpretive
Shared-Decision-Making / Counselor / Contractor Doctor Deliberative
Collegial / Teacher / Friend Physician's role GuardianTechnical expertCounselor or adviserFriend or teacher Physician's obligation Promote what the doctor believes is in the patient's best-interest, regardless of what the patient wants at the time Provide relevant factual information to the patient, and implement patient's course of action Elucidate relevant patient values, interpret for this siltation, inform patient as needed, and implement patient's course of action Persuade patient of admirable healthcare values, work with the patient to determine a course of action, and implement it. Works well for patients who … Unconscious, with an ⚠︎ unplanned medical emergency.
Meek, frail, or elderly patients, who tend to do what they are told. Can make a decision, or consent to a choice made by their doctor Has, or can develop, a real understanding of themselves, and information provided Has, or can develop, a real understanding of themselves, and information provided Concept of patient's autonomy Agrees with objectively-determined values.  May be given choice of yes-no or accept-reject. Controls their own medical care, via making their own choices.  May be given choice of _____. Understands what they want in the medical care.  Has wide choice of treatment options, which might be accepted, rejected, or trailered. Moral self-development relevant to medical care Patient's values Objective, and shared by physician and patient Defined, fixed, and known to the patient Inchoate and conflicting, requiring elucidation Open to development and revision, through moral discussion

… caused us to create 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.

[ This seems best for young, healthy, stable people (including those with medical issues that can be fixed ). ]

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 the 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 / CCRC / LPC / LPRC / LTCF  ] 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.

[ For all 💉︎📅︎ 🇺🇸 vaccines applicable to you, make an appointment to protect you against ⚰💥︎🏥︎ severe disease.

If it applies, review the Dementia Road Map:  A Guide for Family and Care Partners.   ]

Lessons Learned

… from ideas in this book

📅︎ Way ahead of time, we should:

1. Create a good:
     •  Durable Power of Attorney PoA for Health Care DPoAH;   perhaps via Caring Info > your state, and a healthcare provider > link Download our DPOAH form. 
     •  DNR [ or DNAR or POLST 🇬🇧 🇨🇳 🇰🇵 🇰🇷 🇷🇺 🇪🇸 🇺🇦 🇻🇳; ]  and/or
     •  other written advance directives for healthcare
   based on input from the subject and any advisors and stakeholders (spouse, ⚕︎ doctor, kids, etc.), and perhaps tailored by jurisdiction.
     •  Links to these and more, for Michigan.
   
   
2. Store:
     •  at your main 🏥︎ healthcare provider,
     •  at your most-likely 🏥︎ hospital,
     •  [ and on the door of your refrigerator, in a Vial of Life   (via a form filler > Start).  ]
   
   
3. Ensure that 👪︎ any relatives likely to be there near the end:
     •  have these documents and have read them, and
     •  are mentally prepared to follow through on these wishes.

and continue …

Do not fear the 🩸 blood pressure meter (sphygmomanometer)

[ After using my US$43 (€40) Costco blood pressure cuff for some months, I found …

If you want to measure your real blood pressure:

• Never use those awful grocery-store blood pressure kiosks.  Gives data that is useless.  Data, which if you use it to affect your behavior, is dangerous.  Buy your own machine as above.
• Get to your doctor's office 10 minutes ahead of time, then sit quietly and read.
• If you can, at least occasionally, have them use a real manual bulb and stethoscope — much more accurate than robot devices.  If you can't, oh, well, continue …
• Ensure they use the correct size cuff.  Medium is not one-size-fits-all.  If your arm circumference is large or small, have them get the correct-sized cuff!
• Ensure they put the cuff on your left arm.
• Ensure they put the cuff on tight tight tight, with the line lined up with the centerline of your inside elbow.
• Ensure they have your arm straight out in front of you (not dangling), fully-supporting your arm on table or pillows or doc's sweaty armpit.  Hey, it works!
• Sit straight, with your feet flat-on-the-ground, with your legs neither crossed nor dangling;  or
    ◦  lay flat-on-your-back, neither sideways nor crooked.
• No talking nor squirming nor changing position during the BP reading.  You can listen to your doc, but hold your answer until your BP reading is finished.
• Afterward, ask them what your blood pressure reading was.  If FAIL (the results are radically different from that typical for you), have them check again in 5 minutes.
• If you bought your own blood pressure device, immediately use it on yourself.  This will test whether your device is reliable, and whether you can use it at home.  (My first device I got proved unreliable;  I retuned it for a full refund, then bought another of the same brand and price.  The second unit works well, and I still use it today.  Although I still bring it in once or twice a year, to verify it continues to measure correctly.)

If you want to screw up your blood pressure reading (probably make it read artificially-high):

• Just before your appointment, run across the parking lot and up the stairs.
• Allow them to put the cuff on your right arm instead of your left.
• Allow them to put on a cuff that is too large or small for the circumference of your upper arm.
• Allow them to put on the cuff loose, or with the line not lined up with your inside elbow.
• Let your arm dangle, instead of being straight out in front of you fully-supported by something else.
• Sit crooked, with your feet crossed or dangling, not flat-on-the-ground;  or
    ◦  lay sideways or crooked, not flat-on-your back.
• Talk while the automated BP machine is running.
• Don't ask what your blood pressure reading was, nor ask for a recheck, nor verify the results of your own machine. ]

Do not fear the walker, uh, rollator, uh, upright rollator.

[ Do not fear the walker, uh, upright walker, uh, rollator, and now, the upright rollator.  They are terrific.  Starting to use one too early is way better than starting too late:

They prevent falls!

• A relative uses a rollator 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 rollator.  But for longer jaunts, or if carrying a package down the hall, other floors, etc., this relative always goes with the rollator.

Old-time walkers — the kind with four posts with rubber covers on the bottom — are sometimes called an "upright walker."  Which is a terrible name, as we will see below.

Forget the walker.  Rollators are much better — with four large wheels, two with brakes, controlled by hand-levers with three positions:

Besides, rollators usually have a shopping basket or bag that holds what you need:  the package you just picked up, and your every-day carry EDC:  wallet, sweater, sunglasses, flashlight, magnifier, whatever.

And rollators often have a padded platform that can be used as a seat — if you get tired, just set the brakes, turn around, and sit down!

The rollator above works great.  But after seeing a new design in use, I greatly prefer this new design shown in the video ↘ below or to right.

• Generically called an upright rollator;  the brand I saw was UPWalker.
• You keep your spine ║ vertical — no slouching over!
• Your keep your wrists at a natural angle — not tilted forward!
• When I need a rollator, I will have my eye on an UPWalker, classic model, Large frame, with cupholder.  Or whatever the next new thing is then.
• For full effect, select the video image ↗ above or to right, then icons YouTube (if present), ⏯︎ ⊠ Skip Ads (if present), ㏄ captions (if you wish), ⛶ full­screen, and ▶︎ Play.

Short of this, look into trekking poles, such as the Urban Poling series Activator.  ]

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