Aging & Dying

Notes, Advice, Recommendations:   Aging and Dying

[ KENNETH ALAN COLLINS    Last Update:  November 20, 2023 ]

 

Significant portions of these notes are based on reading of

Being Mortal:  Medicine and What Matters in the End by Atul Gawande, M.D. [Gawande]

Knocking on Heaven’s Door:  The Path to a Better Way of Death by Katy Butler [Butler]

At Peace:  Choosing a Good Death After a Long Life by Samuel Harrington, M.D.

[NOTE:  Read carefully, in particular, Chapter 20, Notes for a New Art of Dying, which is rich in specific, concise advice relating to every stage of frailty, disability, decline, active dying, etc.  Also, the Resources section at the end has an extremely helpful list of books, organizations, and the current state of legal issues]

A. GENERAL AND INTRODUCTORY

1)    General considerations

a)    There is no pain, no matter how severe, that cannot be controlled – if it is not being controlled, the pain management is at fault

i)      Growing old “is not a disease”

ii)     Growing old has been treated as a “medical” issue narrowly focused

(1)    This is an approach that has failed

(2)     What constitutes good living, even as we decline, goes far beyond decline as strictly a medical issue

2)    Geriatricians

a)    A geriatrician is trained to focus on the whole person and less on specific ailments

b)    The proper goal of a good geriatrician is more to preserve quality of life than treat specific diseases

c)    Finding a geriatrician is VERY difficult

i)       It is recommended to come under the care of a geriatrician before one is very elderly (e.g., well before turning 75)

ii)      There are very few and many of them do not advertise their specialization in geriatric medicine for fear of too many elderly people flocking to them, so severe is the shortage

d)    A very important indicator of general health of an older person is the condition of their feet:  a good geriatrician will always perform a very careful, detail examination of the feet and toes

3)    Falls – The biggest risk for the elderly is taking a bad fall – the major risk factors are:

a)     Poor balance

b)     Taking 4 or more prescription drugs

c)     Muscle weakness

4)    Non-medical late life issues

a)    For some elderly people, no one is available as a health advocate / power of attorney / make health care decisions (term used is “unbefriended”)

Consider a geriatric counselor or someone specialized in eldercare (including a lawyer)

b)    Review based on elder law (consult a qualified lawyer specializing in elder law):

i)       Financial assets

ii)      Updated estate-type documents: powers-of-attorney, living will

(1)    Is dementia addressed?

c)    Complete the “seven tasks of life review” while still healthy

i)       This is optimally done as a “Family and Friends” letter, sharing with those one is closest those thoughts and feelings one wants to make sure are conveyed at the end of life

ii)      An excellent resource, with letter template, is the Stanford Friends and Family Letter Project

 

B. FACILITIES AND LIVING OPTIONS

1)    Assisted Living issues / Assisted Living facilities

a.     A few key points about the typical model of Assisted Living facilities:

                                      i.     Built/designed/contain features to appeal to an elder’s children, not the elder

                                     ii.     Do not support people’s capabilities, e.g., Dressing someone is easier, less aggravating, less time consuming, than letting them dress themselves, with a little help

                                    iii.     Sold as “safe places,” not as places that put a person’s choices about how they want to live first and foremost

                                   iv.     Safety, and with it, total control and supervision, take precedence and the person’s autonomy is lost or forgotten; yet AUTONOMY / INDEPENDENCE / SELF-SUFFICIENCY is what all of us value more than anything else

                                    v.     We are condemned to a “medically designed answer to unfixable problems, a life designed to be safe but empty of anything” we care about [Gawande]

b.     Consult the Jesse F. Richardson Foundation, for Assisted Living RESOURCES

c.     Several organizations that may have helpful information:

                                      i.     Assisted Living Federation of America

                                     ii.     Concepts in Community Living

                                    iii.     Consumer Consortium on Assisted Living

                                   iv.     Pioneer Network

                                    v.     Eden Alternative

2)    Nursing Facilities

a.     Consult SkilledNursingFacilities.org for finding skilled nursing facilities, ratings, etc.

b.     The 3 Plagues of nursing facilities:  boredom, loneliness, helplessness (one needs a reason to live)

c.     One counter to the 3 Plagues:  Caring for living things (embodied in the Eden Alternative)

                                      i.     Pets (e.g., dogs, cats, caged birds, even an aquarium of fish)

                                     ii.     Houseplants to be cared for (especially blooming plants, but also paperwhites, amaryllis)

                                    iii.     Gardens to get involved in (eg., growing vegetables)

d.     If in a nursing facility, consider specifying a Do Not Hospitalize (DNH) order

                                      i.     Appears that it must be written by a physician

                                     ii.     Option for a qualified DNR or total (i.e., certain situations, like breaking a bone, would allow hospitalization (qualified DNR) or a total ban on any hospitalization, regardless of what occurs

                                    iii.     El Castillo puts DNH orders in the patient’s chart if requested by patient or proxy for health care – each potential hospitalization incident results in “renewing” such a request, since it is treated as a “qualified” request

e.     PACE (Program for All-Inclusive Care for the Elderly) is a government program intended to keep Medicare and Medicaid-eligible seniors out of nursing facilities when possible

3)    Some examples of “new model” care facilities (Assisted Living and/or Nursing Care) that focus on allowing residents to live a life “worth living”

a.     NewBridge on the Charles (Massachusetts)

b.     Peter Sanborn Place (Massachusetts)

c.     Leonard Florence Center for Living (Massachusetts)

d.     The Green House Project (national – almost 200 Green Houses) / National Green House Replication Initiative)

4)    Aging in Place

a.     Known as NORC (= Naturally Occurring Retirement Communities)

b.     Involves

                                      i.     Annual membership fee (often on a sliding scale, depending on financial resources)

                                     ii.     Volunteer services (trips to the doctor, dog-walking, plant-watering, meal delivery)

                                    iii.     Paid services at a discount (e.g., plumbing repair, home health aide)

c.     Many local groups are part of the Village to Village Network

5)     Web site includes a directory to local Village organizations throughout the U.S.

6)     In Santa Fe, the local group is Santa Fe Neighbors / Vecinos de Santa Fe, info@santafeneighbors.org

a.     In some states there are programs for seniors without Medicare/Medicaid to participate in reasonably-priced state-funded home-care programs

7)     To locate any such programs in a given state, search under State Care Giving or State Caregivers and the name of the State

 

C. CONDITIONS, TREATMENTS, BEHAVIORS

1)    Dementia

a.     Triggers for dementia:  depression, isolation

b.     Antidotes that have a proven effective in helping those with dementia emerge somewhat:

                                      i.     Caring for pets (see above, Nursing Facilities)

                                     ii.     Music (see documentary film, Alive Inside)

c.     See discussion of Do Not Hospitalize (DNH) under Nursing Facilities

2)    Medical / Drug interventions in the context of a fatal illness

a.     General medical intervention issues

                                      i.     Doctors (e.g., oncologists) will indicate medical procedures (“aggressive management”) that lead to positive responses, good “long-term” outcomes

                                     ii.     It is VERY important to realize these discussions ignore the brutal fact that one will die relatively soon; it is important to be very clear on the ultimate outcome and to make sure the discussion honestly confronts this.  Only then can one evaluate whether the proposed measures make sense.

                                    iii.     If the physician senses a patient who is unduly optimistic (as most are) that will strongly influence the honesty of the conversation about how to proceed – there is a bit of “the customer is always right” that has become part of the medical world

                                   iv.     Understand that most doctors are far more optimistic about the treatments they offer than actual experience has verified – they suffer from wishful thinking almost as much as the patient

                                    v.     Understand that most doctors offer treatments to dying patients (who think they have much more time than they do) – treatments that they themselves (the doctors) do not believe will work in many instances

                                   vi.     Pin down, in a very detailed way, how much extra survival time a particular course will offer and what percent, in precise numbers, get that extra time – this is part of evaluating if it is worth it

                                  vii.     Explore in a very detailed way what all the side effects and risks of different procedures and drugs are

                                 viii.     In some instances, doctors may be following insurance company policies on drug usage and not making autonomous decisions on what they think the best treatment is – ask probing questions

                                    ix.     Always include a discussion of options other than aggressive management

                                     x.     For a completely opposite view, consider Stephen Jay Gould’s belief:  “The median is not the message” – some treatments may offer hope for a small percentage of sufferers and you just might be amongst that small group

b.     Drug treatment issues to consider

                                      i.     Really pin the physician down on what “good response rate,” “excellent long-term outcome,” “markedly longer survival in some patients,” etc. means in very precise terms – these and similar terms can be EXTREMELY misleading

                                     ii.     Most patients who are dying think the treatments the physician offers will extend their lives decades, when at most it is usually a few months

                                    iii.     Doctors usually use first the drugs/medications they think have the best chance of success – 2nd-line alternatives, if the first choice does not work, are less likely to work; even more so for 3rd-line drugs

                                   iv.     A number of basic, critical drugs needed to treat serious conditions (e.g., cancer, heart failure) are in short supply

1.     Be sure to inquire if this situation applies to one’s own course of treatment

2.     Ask to be informed what the ethical standards are for administering critical drugs in short supply (that is, not sufficiently available to treat everyone who needs the drug)

                                    v.     Be aware that most experimental therapies / clinical trials offer no improvement over existing therapies and in fact usually have worse outcomes

1.     Many experimental drugs have not even been tested for effectiveness

2.     Safe dosage and toxicity may not have been established

    vi.    Increasingly, cannabis in various forms is being found to be more effective for various conditions than prescription medications.

c.     Even if near-term death (less than 12-18 months) is not the issue, it is important to understand what the quality of life will be like after the treatments

                                      i.     What will one be able or not able to do or experience

                                     ii.     What is most important to you in staying alive

d.     Implantable defibrillator:  While it may prolong life for someone with a failing heart, it can prevent a quick, painless death, and lead to a prolonged, painful death – consider this option with great caution

e.     Avoid the following completely if it is obvious that the person is “actively dying” – this is ESSENTIAL:

                                      i.     911

                                     ii.     ICU – it is almost always a terrible choice at the end of life and should be strenuously avoided

                                    iii.     CPR (Cardiopulmonary resuscitation

                                   iv.     ER

                                    v.     Feeding tubes

                                   vi.     Antibiotics

                                  vii.     Pacemakers

3)    Surgery in the elderly

a.     For the elderly (>80 and esp. >85) or frail there is no such thing as “minor surgery”

                                      i.     Doctors almost always exaggerate the “pro’s”

                                     ii.     The “con’s” and alternatives are vastly understated or neglected

                                    iii.     Most individuals, after such surgery, regret their greatly diminished quality of life

b.     For every surgical procedure ask the same set of questions listed under “General End-of-Life issues and considerations

                                      i.     Surgery likely will be presented as just what is needed to deal with an immediate problem but in fact, it may well have MAJOR implications for one’s entire remaining time and well-being

                                     ii.     A proposal for surgery can be turned down or modified to be less drastic

                                    iii.     Cognitive decline (permanent) is not uncommon after any surgery using general anesthetics

                                   iv.     Always seek advice from one’s GP, or better yet a palliative care specialist and/or geriatrician

4)    Doctor behaviors for seriously ill / dying patients:

a.     Sit down with the individual (do not stand) – creates a sense of commitment, taking time to talk

b.     Let the patient talk without interrupting

c.     Avoid jargon – explain issues in day-to-day language

d.     Certain questions can be answered a right way or a wrong way (Example of a wrong way of answering:  “There is nothing more we can do for you”)

 

D. HOSPICE / PALLIATIVE CARE / END-OF-LIFE

1)    Hospice

a.     Philosophies of Hospice, Slow Medicine, and Palliative Care are virtually the same:

                                      i.     Comfort first

                                     ii.     Shared decision making

                                    iii.     Clarity about medical goals

                                   iv.     Coordinated support for the whole family

                                    v.     Pragmatism

                                   vi.     Limiting burdensome interventions

b.     Most patients enter hospice far too late – in the last 2 weeks (or less) of life

                                      i.     Most doctors way over-estimate how much time a person has left

                                     ii.     Find a sympathetic doctor who supports hospice and will sign the certifying letter

c.     In most cases, entering hospice with enough time to let its approach work results, surprisingly, in somewhat longer life than aggressive medical interventions and with a much higher quality of life in the terminal phase

d.     Hospice’s focus is not simply pain reduction with letting illness take its course, but rather active management of patient comfort

e.     One option sometimes used:  Concurrent Care (both hospice and active medical intervention, hospital visits, etc.)

f.      Another option:  Hospice care plus palliative care offered by the supervising hospital

g.     If under hospice care and a “life-threatening” immediate health emergency is suffered, NEVER call 911, etc. – only notify the hospice service: being rushed to the ER or ICU can undo the good work of hospice care

                                      i.     In a nursing care facility (e.g., El Castillo Health Center) it is ESSENTIAL that prior arrangement be made through palliative care or hospice service to NOT send individual to ER or ICU at a hospital if a “life-threatening” event occurs – staff of nursing facility will always try to arrange for ER/ICU.

                                     ii.     At El Castillo, if one is under hospice care, Health Center staff will contact hospice first

2)    Palliative care

a.     What it is

                                      i.     Specialized medical care for people with serious illness at any point in patient’s life

                                     ii.     Co-exists with curative care

                                    iii.     Is not end-of-life care

                                   iv.     Focus is on “care” rather than “cure” – maximizing “function” and controlling symptoms

b.     Applies to anyone who has advanced, serious condition

                                      i.     Not only for the elderly

                                     ii.     Does not require a diagnosis of only 6 months to live – can kick-in regardless of remaining time

                                    iii.     Can be used for individuals of any age with up to years more of life

c.     Many hospitals have inpatient palliative care teams / services

d.     Outpatient services often exist but are not publicized

                                      i.     Often physicians will not tell about such services (inpatient or out-) – be persistent, ask, ferret it out

e.     Does not require a doctor’s letter or certification that death is close

f.      See discussion of Do Not Hospitalize (DNH) under Nursing Facilities

3)    General End-of-Life issues and considerations

a.     Understand / be able to explicitly state your goals & priorities for your remaining time

                                      i.     What are your fears entering this final phase?

                                     ii.     What are your hopes entering this final phase?

                                    iii.     What matters most – the fears or the hopes?

b.     Some important questions to be able to answer:

                                      i.     What do you understand your prognosis is?

                                     ii.     What are your concerns about what lies ahead?

                                    iii.     What kinds of trade-offs are you willing to make?

                                   iv.     How do you want to spend your time if/as your health worsens?

                                    v.     Whom do you want to make decisions if you cannot?

c.     Music that is meaningful can be a very important element at the end of life

      d.     Numerous experiments demonstrate the effectiveness of psychedelics (e.g., psilocybin, LSD, peyote) in allowing terminally ill people to actively and positively accept dying

                                        i.   Some psychedelics are legal in a few locales but change to greater acceptance is likely in the future.

e.     The “Four Things that Matter Most”

                                      i.     Generally spoken to mend relationships at the end of life, but valid anytime, not just at the end

                                     ii.     The “Four [spoken] Things” are:

1.     Thank you

2.     Please forgive me

3.     I forgive you

4.     I love you

5.     A fifth thing to say at the end of life:  Good-bye

f.     One must know the point when to stop fighting – a sensitive physician willing to take the time to discuss this honestly and/or a palliative care specialist can be crucial to this

g.   A relatively recent type of support in dying is a Death Doula or Death Midwife, performing a comparable role as a Doula at a birth

h.      Possible methods available to those who choose to die and live in states that have not legalized assisted dying:

                                      i.     One legal end-of-life approach to speed death is SEAD (Stop Eating and Drinking) also known as VSED (Voluntary Stopping Eating and Drinking), but this decision must be made by the individual, it cannot be made by someone else for the individual.  (See Resources below for recommended book, Choosing to Die, for more detailed information on VSED.);

                                     ii.     Stopping current treatments with the high probability that such a decision will lead to death;

                                    iii.     Foregoing new and/or experimental treatments;

                                   iv.     Palliative/terminal sedation:  this is legal and accepted; it can be initiated by providers to reduce pain and suffering, generally in a hospital;

                                  v.    “Final exit / Suicide” (death with dignity, physician assisted end-of-life, physician assisted suicide) is now legal in a number of U.S. states, including New Mexico -  see Resources below for Final Exit Network;

New Mexico’s Death with Dignity law incorporates a more flexible, less restrictive approach than most other states to how terminally ill patients can proceed to end their life.

                        vi.   Currently Switzerland permits assisted dying to non-citizens and short-term visitors:

1. Prominent organizations to help non-citizens are

a. Dignitas

b. Pegosos Swiss Association

2. There is a monetary expense and it may be somewhat high


 

E. LEGAL ISSUES

1)    Acting as health care proxy for another person

a.     General issues

                                      i.     It is VITAL: that any designated proxy be totally committed and in agreement with one’s wishes – having in-depth conversations in advance to ensure this is essential

                                     ii.     Consider designating 3 people, in order, as one’s proxies (e.g., Durable Power of Attorney) – this is legally permissible in New Mexico

b.     Behavior caveats for a health care proxy

                                      i.     Read Butler, Chapter 13 (“Deactivation”) VERY CAREFULLY on how one has to construct a request to withdraw a device keeping a person alive, thereby prolonging extreme suffering

                                     ii.     One can lose one’s proxy if it is determined that a surrogate has lost “decision-making capacity” and this can effectively undo the wishes of the person who granted the proxy – one can lose this capacity by

1.     Making requests in the wrong language

2.     Becoming agitated, boisterous, loud or disruptive in making requests/demands

3.     Threatening a lawsuit or “firing” hospital personnel involved with the patient

4.     Conveying the sense that what is demanded is what the proxy wants, not what the patient would want

2)    Do Not Resuscitate (DNR) orders

a.     Understanding what DNR is / is not:

                                      i.     Must be issued / signed by a physician – it is reversible but this also requires a request to the physician

                                     ii.     Applies only to the hospital (including ER) but NOT outside the hospital setting

1.     Calling 911 and being taken by ambulance to a hospital typically overrides DNR order

2.     Where available, POLST / MOLST / MOST form may cover DNR wishes outside of a hospital setting including for EMT personnel (e.g., ambulance, home) – see other sections here

                                    iii.     Often does not work / is not advisable for individuals with widespread cancer or infection, or terminal illness

                                   iv.     Only covers Cardiopulmonary Resuscitation (CPR) – no other medical procedure!

1.     Basic CPR

a.     Chest compression

b.     Mouth-to-mouth breathing

2.     Advanced CPR

a.     Intubation

b.     Mechanical ventilation

c.     Medications (blood pressure regulation, heart rhythm, etc.)

d.     Cardioversion (electrical shocking)

b.     Legal / practical aspects:

                                      i.     Every state has very specific requirements on how DNR orders are to be executed, recognized and accepted

                                     ii.     The following Web site provides links to the requirements of each state:  http://www.americanmedical-id.com/extras/dnr.php

                                    iii.     Many states require the individual to wear a state-issued bracelet – a written DNR is not sufficient; other states make the bracelet optional (this appears to be the case for New Mexico)

                                   iv.     MedicAlert Foundation (http://www.medicalert.org/ or 800/432-5378) can supply (for a purchase price) a DNR bracelet inscribed per New Mexico legislative requirements

3)    Advance Health Care Directive:  Be sure to include

a.     Answers to the following to assist others in making decisions for you:

                                      i.     What do you want to be able to do until the day you die?

                                     ii.     What gives life meaning for you?

                                    iii.     What experiences have you had with who have had serious illnesses or have died?

b.     Statements of goals, values, and fears

c.     Five Wishes document is accepted in most states (including New Mexico) as a legal Advance Health Care Directive

                                      i.     This was developed by a “right-to-life” devout Catholic and has certain “traps”

                                     ii.     For important caveats in using this form, see: https://www.compassionandchoices.org/tag/five-wishes/

                                    iii.     Use lawyer-developed legal documents consistent with state requirements or one’s state’s official advance directive form(s) instead of Five Wishes

d.     Professor Barak Gaster, University of Washington, has developed an Advance Directive exclusively for dementia (with choices for mild, moderate, and severe dementia)

                                      i.     To download the form, go to;  www.directive=dementia.org

                                     ii.     While it is not clear at this time what the legal status of this form is, it can serve as a very helpful addendum to spelling out one’s wishes before dementia sets in, over and above an advanced directive for other conditions

e.     End of Life Choices NY has developed instructions and an advanced directive form specifying end of life choices for receiving (or not) food and drink orally when dementia is involved:

                                      i.     To obtain the form, go to:

http://endoflifechoicesny.org/wp-content/uploads/2018/03/3_24_18-Dementia-adv-dir-w-logo-no-donation-language.pdf

                                     ii.     The legal validity of this form is not clear but it provides excellent guidance for the POA for Health Care, for family and friends.

f.      End-of-Life Washington has an excellent selection of documentation – instructions, general information, forms, relating to end-of-life issues, dementia, Alzheimer’s, etc.  Go to:  https://endoflifewa.org/ and select the pulldown “Planning”

4)    Physician’s Orders for Life-Sustaining Treatment (POLST) / Medical Orders for Scope of Treatment (MOST)

a.     POLST and MOST (and MOLST and POST) essentially serve the identical function

                                      i.     New Mexico has chosen the MOST approach for a variety of reasons

                                     ii.     At this time, the form is not available electronically in New Mexico – it can only be completed in hardcopy

b.     Legal aspects

                                      i.     Provides detailed, explicit wishes/directions for end-of-life care

                                     ii.     MOST is a legally accepted document in New Mexico as a valid expression of wishes by medical personnel

                                    iii.     A properly executed New Mexico MOST form likely would be accepted in other states but bear in mind that some states have additional requirements for their own version of the form to be valid (i.e., that it be notarized) – this would probably not affect acceptance of a NM MOST form presented in another state by an NM resident

                                   iv.     Copies of the original form should be distributed as any other Advance Directive document

c.     Use of the completed form

                                      i.     Considered an Advanced Health Care Directive written in the form of a physician’s order

                                     ii.     Designed to be used

1.     Within approximately the last year of life

2.     When seriously ill or experiencing a life-limiting illness

                                    iii.     Should be carefully reviewed/discussed with one’s physician

                                   iv.     All procedures or withholding of steps/procedures must be explicitly approved at the time of implementation

                                    v.     Any other related documents (Living Willing, Durable Power of Attorney for Health Care, personal statement guiding end-of-life values) should be referenced or “bundled” with a completed/signed MOST form

                                   vi.     It is entirely likely that as one’s situation changes over time, it would be necessary to revise the MOST document to reflect such changes.

5)    Guardianship Abuse

a.     An underappreciated issue is the presence of predatory, shady businesses that obtain medical certification of incompetency and can take a guardianship role for the affected individuals, with almost no interference from immediate family, lawyers.

b.     Most states have minimal or no legal regulation of this type of extreme abuse.

c.     For an eye-opening, sobering and quite frightening description of the situation, see the article The Takeover by Rachel Aviv in the October 9, 2017, New Yorker.

d.     The National Association to Stop Guardianship Abuse is an organization specifically established to provide advice and connect individuals to resources

e.     A Web search will lead to numerous helpful articles

 

F. MISCELLANEOUS ISSUES

1)    Personal documentation to prepare in advance

a.     Each person, as s/he ages, should take care of a number of matters – these are listed below.

b.     This information should be shared with any individuals who will be responsible for one’s estate.

c.     Essential information that should be documented in advance, include:

                                      i.     Document in one central location / system all one’s legal, financial accounts, credit card and bank information, memberships, insurance, retirement accounts, and a variety of personal information to assist one’s executor / caregiver;

                                     ii.     Provide a list of critical locations for computer files and their organization (e.g., into folders), photos, special collections (e.g., stamps), keys, hard drives and flash drives, etc.;

                                    iii.     Indicate where User IDs and passwords are stored for various online accounts and arrangements for closing down such accounts after death;

                                   iv.     Inventory and make accessible a list of the contents of one’s safe deposit box;

                                    v.     Wishes as to disposal or donation of various personal possessions;

                                   vi.     Information on burial arrangements and any pre-paid funeral/cremation package, green burial, etc.;

                                  vii.     Desires for a memorial service and specific elements of such a service;

                                 viii.     Consider preparing one’s obituary or a brief summary of one’s life;

                                    ix.     Make wishes clear as to autopsy and organ donation.

2)    Downsizing

a.     Few people begin to downsize while they are alive and in the good mental state to be in charge of the process, so that valued items find a “good home” (e.g., relatives, friends, museum, etc.)

b.     A highly recommended book for undertaking this is The Gentle Art of Swedish Death Cleaning:  How to Free Yourself and Your Family from a Lifetime of Clutter, by Margareta Magnusson, 2018.

c.     Consider engaging an experienced estate sale business to handle much of disposal

 

G. RESOURCES

§  Miscellaneous (Web Sites)

o   UptoDate: Many types of useful information on disease prognosis, end-of-life issues, etc.  Some parts may require a paid subscription but one can subscribe for a brief period (e.g., one week)

o   Coping with Cancer

o   Slow Medicine Movement (Quality of Life over Quantity of Years)

o    Compassion and Choices

o   National Hospice and Palliative Care Organization (nhpco.org)

o    Good Medicine / Jennifer Brokaw

o    Many useful organizations listed in the RESOURCES section of Katy Butler’s book (see citation at top)

o    Prepare for Your Care (https://prepareforyourcare.org/?dir&page=9-1_2&lang=en )

o    The Conversation Project (http://theconversationproject.org/ ) – How to have “the talk” as life is nearing its end

o    The Stanford Friends and Family Letter Project (http://med.stanford.edu/letter/friendsandfamily.html) – The seven tasks of life review and the “last letter” to friends and family

o    End of life Issues:

§  End of Life Choices NY: http://endoflifechoicesny.org/

§  Exit International – https://exitinternational.net

§  Resource Organizations

o    Area Agency on Aging:  For advice and assistance on a wide variety of elder care issues, contact one’s local Area Agency on Aging

o    To find the Area Agency, go to the National Association of Area Agencies on Aging

o    PACE (Programs of All-Inclusive Care for the Elderly) is a government program intended to keep Medicare and Medicaid-eligible seniors out of nursing facilities whenever possible

o    Elder care and assistance organizations:

§  Aging Life Care Association

§  Eldercare Locator (Government resurces)

§  Legal Services for Older Adults and Elder Law (DHHS)

§  National Academy of Elder Law Attorneys

§  Patient / Care-coordination sites for obtaining assistance, communicating with others when an individual is sick

o    Lotsa Helping Hands (http://lotsahelpinghands.com/ )

o    CarePages (https://www.carepages.com/ )

o    CaringBridge (http://www.caringbridge.org/ )

§  Palliative Care

o    An excellent resource is Get Palliative Care (https://getpalliativecare.org/ ) – background, provider locator

§  Local (Santa Fe, NM) senior care and assistance organizations:

o    Egis Care & Support LLC (Egis Senior Services of New Mexico), http://egisnewmexico.com/ or 505 / 995-0485

o    Fortina Solutions,  https://fortinasolutions.com/

o    Crossroads Aging Care Professionals, LLC,

   https://www.crossroadsaging.com/

o    Coming Home Connection, http://www.cominghomeconnection.org/ (Nonprofit placing volunteer companions with anyone needing in-home care)

§   End-of-Life

o    For detailed information on using VSED (Voluntarily Stopping Eating and Drinking) obtain the book Choosing to Die: A Personal Story.  Elective Death by Voluntarily Stopping Eating and Drinking (VSED) in the Face of Degenerative Disease by Phyllis Shacter (ISBN 9781543173161).  To obtain this book, contact the author, info@PhyllisShacter.com .

o     There are several Web sites focused on a broad range of end-of-life planning, including document checklists, grief and loss, and how to make health decisions.  Several prominent sites are:

§  Cake: https://www.joincake.com/?redirectedFrom=welcome

§  End-of-Life Washington. https://endoflifewa.org/

§  Lantern: https://www.lantern.co/

o    The Final Exit Network (finalexitnetwork.com) focuses on making a decision to die (e.g., for intractable pain) – consult its Exit Guide Services.

§  Drugs

o   The American Geriatrics Society’s Beers Criteria for Potentially Inappropriate Medication Use in Older Adults may provide useful guidelines for drugs to avoid

§  Best location to consult the list, which is not made easily accessible, may be at: http://www.guideline.gov/content.aspx?id=37706