Category Archives: End of Life

Many people have completed advance care directives (healthcare power-of-attorney, living will, POLST, Five Wishes, etc.) but, as this New York Times article points out, they haven’t distributed copies to the right people and they don’t have a copy available when needed.  The article notes that often these ACDs are at lawyers’ offices or in safe deposit boxes.

Between the article and the comments on the article, this advice was given as to whom to distribute copies of your ACDs:

• primary care physician
• other physicians including neurologist and cardiologist
• individuals named as healthcare decision-maker
• additional family members and friends

The author says:  “The more copies there are in circulation, the better the odds that one will materialize at the hospital when you need it.”

One of the comments had this useful advice from an attorney:  “I also tell clients to enter the names and numbers of their agents/proxies into their cell phones under an entry entited ICE== in case of emergency.  EMTs look for ICE numbers as well.”

Speaking of EMTs…  One local support group member handed his wife’s living will to the EMTs, who came to their home after he dialed 911 as his wife had fallen.  This is not a form that the EMTs can do anything with.  The only form that should be handed to EMTs is the POLST, which stands for Physician Orders for Life-Sustaining Treatment.  For lots of good info on the POLST, see capolst.org.

Other comments contained advice on where to place copies:

• On the refrigerator door

• If not on the refrigerator door, then put note on refrigerator door telling EMTs where the copy can be found, maybe near a bed or on the back of a door.

• “Put a copy of it in the glove box of your automobiles, and ask your named health care agents to do the same.”

• “If your health care agent is likely to take an airplane to your home destination, ask him/her to put a copy in his/her luggage.”

• Save copies electronically in various places – Google Drive (and give access to others), Dropbox (and give access to others), on a smartphone, with a service, on a USB drive.

One other worthwhile suggestion — if you are wanting the ACD of a family member, ask them to give you their completed ACD as a Christmas gift.

Here’s a link to the full article:

newoldage.blogs.nytimes.com/2013/10/17/wheres-that-advance-care-directive/

The New Old Age: Caring and Coping
The New York Times
Where’s That Advance Care Directive?
By Paula Span
October 17, 2013, 6:00 am

Robin

Michael Krasny, host of Forum, a radio program on KQED, focused on the logistics of death in a 52-minute long program on Monday, 10-14-13.  One guest was attorney Scott Taylor Smith, author of the new book “When Someone Dies: The Practical Guide to the Logistics of Death.”

Scott Taylor Smith said that as soon as his mother died, the questions began, despite his grief.  First, what mortuary did he intend to use?  Second, the mortuary wanted to know how many death certificates he wanted.  (His suggested answer is take the number of credit cards someone has and multiply by two.  That’s how many death certificates you may need.)

He suggests that you write the obituary and plan the memorial before the person dies.  For his mother, the family wanted to have a celebratory event.  This meant that they waited 6 months after her death before having the celebration.

Scott Taylor Smith talks about conflict in his family over the use of morphine for his mother.

Another guest was Jim Mitchell, an estate lawyer with Coblentz, Patch, Duffy & Bass in San Francisco.  He talked about probate and revocable trusts.  He was asked the downside of setting up a trust; his reply – “attorney’s fees.”  He discussed “permanent” estate tax legislation.

Jim Mitchell talked about two powers of attorney documents:  medical and financial.  He recommends consulting with an attorney on these documents but noted that they are available online.

A couple of the callers mentioned the POLST form.  This form must be signed by someone’s MD.  See capolst.org.

You can find an audio recording here:

www.kqed.org/a/forum/R201310141000

I looked over the comments, gleaning one resource and one suggestion:

* everplans.com:  “articles, tips, and checklists to help people with everything from who to call first to how to choose a casket to what the various religious traditions are”

* “Death Certificates are expensive, as well as awkward to obtain. Good News: you can actually request that the various agencies, institutions, et cetera which require presentation of theses documents RETURN them to you (include a SASE with a note. Almost all of them will do so. The really only need to see (and then copy) same. The only exceptions for me were real estate-related (mortgage-holders). Even Social Security returned the certificate. I “recycled” several of them, and in doing, saved myself a lot of money, time and effort.”

Robin

A social worker friend lent me this book recently:  “A Caregiver’s Challenge: Living, Loving, Letting Go,” by Maryann Schacht, MSW, who lives in Santa Rosa.

The Introduction to the book is about being thrust into the caregiving role, without warning or training.  After her husband was diagnosed with cancer she realized:

“In spite of all my protesting and my shortcomings, I had to accept the inevitable and become the best caregiver that I could be.”

She writes:

“This is the ultimate caregiver’s challenge: to remain steady in adversity and loving throughout the loss.  We have to develop the ability to let go of all expectations and accept mortality, our partner’s and our own.”

In the remainder of the book, the author offers many practical suggestions and plans.  There’s a section on evaluating pain.  There’s a section on organizing one’s key documents and records.  Each section is short and to the point.

Besides the Introduction, the section I liked the most was about having a conversation with your loved one about medical decisions.  I wondered if most of us would be able to ask or answer many of the questions the author raised.  I’ve copied below some of the many questions she posed that families discuss.  The author strongly encourages a summary of this conversation and related decisions be put in writing for all family members to see, if the need arises.

Robin

Excerpts From:

“A Caregiver’s Challenge: Living, Loving, Letting Go,” by Maryann Schacht, MSW, 2005.

Independence/Dependence
1.  Do you pride yourself in doing things for yourself?
2.  Have you learned how to ask for help?
3.  Are you able to take in and accept other people’s desire to help?  If not, what previous patterning makes it hard for you to do that?
4.  If your ability to do for yourself lessens, in what way will it affect your self-image?
5.  How do you feel about life if dependency becomes a part of it?

Your Support System
1.  Do you believe that your family and/or friends are or will be supportive of your present or future medical decisions?
2.  Have you made any arrangements for a family member or friend to make medical decisions for you now or in the future?  If so, under what circumstances?
3.  Are you comfortable with whom you have chosen?
4.  Do you have any business, legal, or personal matters that feel unfinished at this time?  What do you need to do in order to put your affairs in order?
5.  What do you believe about the way you would handle illness, dying, death?

Home and Hearth
1.  Is your current environment comfortable?
2.  Do you need to make physical changes in it?  How can you arrange to do that?
3.  Are you considering moving or having someone come to live with you?  What are the pros and cons?

Finances
1.  Is money for your care a problem?
2.  Do you hesitate to spend money on yourself?
3.  Are you concerned about the financial impact your care is having on your family?  Have you discussed your concerns?

Treatment Considerations
If a treatment is painful or invasive but offers a reasonable hope for a good outcome, would you agree to it?  If the changes are slim and the results are going to be problematic, do you want to consider it anyway?  In coming to a conclusion you might want to consider the impact the treatment will have on your:
* relief from pain
* ability to experience relationships
* ability to engage in favorite activities
* ability to think
* ability to communicate
* financial costs
* suffering and anxiety to others
* reconciliation and tying up loose ends
* control of bodily functions
* ability to move about
* privacy
* religious needs

I realize it is difficult even to face the possibility of dying.  The following statements have been helpful to other people.  Adapt or adopt them as you see fit.  Add to them.  Subtract from them.  Feel free to explore.  I suggest that you keep a pad and pencil handy and make notes as you go along.  Keep on communicating.
* In case of doubt, I want you to extend my life.
* I want only those treatments that offer reasonable hope of restoring me to a condition that my loved ones think would be acceptable to me.
* I do, or do not, want treatment if there is only a remote chance it might help me.
* I want treatment decisions made with consideration of my overall condition and the treatment’s ability to improve this.
* I want sufficient pain medication to keep me free of pain even if the dosage necessary might shorten my life.
* I want the cost of treatment and the financial impact on my family or community to be considered when making decisions.
* If I lose consciousness and have no reasonable hope of regaining it, I want all treatment stopped (including food and fluids).
* I want my loved ones and professionals to make decisions about my care the way they think I would make them, if I were able.