Finding out “not wanting to live hooked up to machines” means; mediation resources; etc.

Susan Weisberg, a wonderful hospice social worker who had a family member with Lewy Body Dementia, forwarded me this recent blog post in the New York Times.

The blog post is about a medical ethics professor who is part of a family that did not adhere to her father’s wishes for “not wanting to live connected to machines.”

The author makes three points:

  • “What I hadn’t considered before my father’s heart attack was the precise meaning of ‘not wanting to live hooked up to machines.’ When people say that, it’s unclear whether they mean that they don’t want to live for the rest of their days in this condition, or that they don’t want to live for even a few weeks like that. The question of “how long?” is one we would all do well to consider.”
  • “The biggest lesson I have learned is that every family should not only discuss end-of-life wishes but should act on them by filling out an advance directive. If my father had completed one, his end might have played out differently. By the time we told the medical staff that he didn’t want to be hooked up to machines, he already was, and we acquiesced in letting things take their course, with the hope that he might improve.”
  • “What I wished we had had…was a conversation with his physicians about end-of-life possibilities right from the beginning.. … Honoring my dad’s wishes meant taking him off the ventilator while we still had that option.  The timing was key, but no one explained this or advised us how to determine when the time would be right. We now shudder that, because of hope, we were slow to see this choice and might so easily have missed it. … [Confronting] the end from the beginning might alleviate some of the inevitable feelings of guilt that arise when people make the decision to end life support.”

You can find the article here:

well.blogs.nytimes.com/2014/12/01/hoping-for-a-good-death/

Family
Hoping for a Good Death
New York Times
By Elizabeth Reis
December 1, 2014 7:05 pm

Note that the POLST form in California (capolst.org) gives people an opportunity to say that either they want no treatment, they want full treatment, or they want treatment for a limited amount of time.  If “limited amount of time” is selected, the person may state how long that is, whether it be a few days or a few weeks.

Anyone who is frail or who has a serious medical condition should complete a POLST form.  All of us should complete an advance care directive.

 

Robin

 

“How long have I got left?”

This is a New York Times article written by Stanford neurosurgeon Dr. Paul Kalanithi about being diagnosed with advanced-stage lung cancer in 2013.

By the way, one of our local support group members went to undergrad with Paul, and had this to say:  “he is such a warm, intelligent and funny person. I’ve been blown away by his story and how he has handled his diagnosis and shared his insights with the world.  A true gift.”

What first drew me to the NYT article was the discussion about statistics and prognosis.

Many of our local support group members who are caregivers (myself included) want to know how long their loved one has left to live with a neurological disorder.  And many of our local support group members who are those with a neurological diagnosis also want to know how long they have left to live.  Not everyone asks these questions but many do.

In reply, I recite the averages based on published research with confirmed (through brain donation) cases.  But no one can know what an individual’s prognosis is.

It was interesting to read Dr. Kalanithi’s new take on the prognosis question.  After he got a lung cancer diagnosis, he asked the same question of his oncologist:

“But now that I had traversed the line from doctor to patient, I had the same yearning for the numbers all patients ask for. … She flatly refused: ‘No. Absolutely not.’ … At each appointment, a wrestling match began, and she always avoided being pinned down to any sort of number.”

“The path forward would seem obvious, if only I knew how many months or years I had left. Tell me three months, I’d just spend time with family. Tell me one year, I’d have a plan (write that book). Give me 10 years, I’d get back to treating diseases. … My oncologist would say only: ‘I can’t tell you a time. You’ve got to find what matters most to you.'”

Eventually, Dr. Kalanithi has a revised view on the statistics and prognosis question:

“What patients seek is not scientific knowledge doctors hide, but existential authenticity each must find on her own. Getting too deep into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability.”

As you can probably tell, the entire article is worth reading.  Here’s a link to it:

www.nytimes.com/2014/01/25/opinion/sunday/how-long-have-i-got-left.html

SundayReview | Opinion
How Long Have I Got Left?
New York Times
By Paul Kalanithi
Jan. 24, 2014

Robin

Having a “palliative care conversation”

For the last several years, I’ve been attending the annual Jonathan King lecture at Stanford.  King had cancer and started a lecture series before he died to get across two messages to MDs:

  • they must empathize with their patients
  • they must foster a patient’s feelings of control and hope

This year’s lecture on October 21st was remarkable.  Palliative care expert Timothy Quill, MD, gave a talk about the importance of palliative care.  He said that palliative care is for the seriously ill with “a high symptom burden”, while hospice is for the terminally ill.  In palliative care, there are three thoughts:

  • we hope for the best
  • we attend to the present
  • we prepare for the worst

Dr. Quill noted that all physicians should be able to have a palliative care conversation with their patients.  The conversation includes open-ended questions such as:

  • what is the best that might happen
  • what is the worst that might happen
  • is faith important

Quill believes that “doctors should address the emotional ramifications of illness, as well as the medical treatment plan, with their patients.”

Though Dr. Quill’s lecture was very good, what made the event so remarkable is that he had a palliative care conversation with a Stanford neurosurgeon who was diagnosed last year with advanced-stage lung cancer.  Dr. Paul Kalanithi, the cancer patient, was very open about his thoughts and feelings.  I first read about Dr. Kalanithi in January 2014 as he authored an article in the New York Times about being diagnosed and wondering what his prognosis is.  It was an honor to meet him in person.

Stanford Medicine published an article about Dr. Quill’s conversation with Dr. Kalanithi.  I hope the wonderfulness of the event comes across in the article.  Here’s a link to it:

med.stanford.edu/news/all-news/2014/10/a-conversation-with-a-cancer-patient-facing-the-end-of-his-life.html

A conversation with a cancer patient about palliative care
Stanford Medicine News Center
October 22, 2014

Robin

 

 

“What to say to the dying: A hospice chaplain offers some insight”

This lovely article by a hospice chaplain shares his thoughts on discussions about death and dying.  Here’s a key excerpt:

There are four phrases that chaplains often offer to people who are dying and to those they love the most, to facilitate sacred conversations:

* “I love you.”
* “I am sorry for what has gone wrong between us.”
* “I ask your forgiveness for the part I had in any hurt between us.
* “I thank you for your role in my life.”

There is no need to wait for such sacred conversations.  We can have them at any time, and be blessed by the sharing.   

The full article is copied below.

Robin

—————————-

www.ehospice.com/usa/ArticleView/tabid/10708/ArticleId/12775

What to say to the dying: A hospice chaplain offers some insight
ehospice USA
Author: Rev. Rona Tyndall
23 October 2014

In honor of Hospice Chaplain Week, Care Dimensions coordinator of spiritual care offers this commentary to explain the vital role of a hospice chaplain and the types of conversations and support they offer to dying patients and their families.

Perhaps like I, you like to eat pizza and watch movies on Friday nights.

One night, I watched, “Cleaner.” Samuel L. Jackson plays a former police detective who owns a company that cleans up death scenes.

The opening scene takes place at his 30th high school reunion.  His former classmates are all standing around awkwardly with drinks, making small talk about what they’ve been doing for the past 30 years.  Someone asks The Cleaner what he does.   He responds with the utmost respect and compassion necessary for speaking an ugly truth,

“I handle the remnants of heartache and disappointment so that people can go about the business of healing. Most people don’t know this, but someone dies in your home, you are left to clean it up.”

The classmates look confused.  The Cleaner shares in vivid detail, right down to the special mixture he invented from Listerine to un-coagulate blood.  Everyone is horrified; mouths agape, shifting from one foot to another, coughing nervously.  Noticing their discomfort, he tries to avert attention, asking one of the guys how things have been going for him for the last 30 years;

“Oh, married to the same woman since college, the kids are great, playing a little golf, just got a bigger house so my mother-in-law could move it.  It’s fine; she almost never leaves her room.  Some day she won’t come out.”

Then, a funny look of realization flits across his face and he says to the cleaner, “Um, can I have one of your cards?”  “Sure,” comes the response, “sooner or later, everyone needs us.”  One at a time, each person in the crowd steps forward for a card.

The opening scene touched me; it felt familiar.  People who deal with death know what it feels like to be a skunk at a lawn party.

That’s pretty much how people react when I tell them I am a hospice chaplain; initial discomfort that such service is necessary, followed by the realization that almost everyone needs hospice care for themselves or a loved one eventually, and finally the realization that the person standing in front of them, who tends to the very deepest of sorrows, does so from a place of deep compassion and love. Then, they ask for my card.

Love, loss and longing…those are the themes that I work with every day in my ministry.

I love my job, but the most frequent question I get asked is, “Isn’t it depressing?”  It isn’t.  It is sad, often, but not depressing.  Depression is isolating, lonely, hopeless.  Sadness (sorrow) is a point of deep connection, because as human beings, we all experience it at various points throughout our lives.  Joining in that emotion, and the emotions of love, loss and longing that drive sorrow (sadness) begets a deep heart-connection, one to another; the very antithesis of the isolation, loneliness and hopelessness of depression; the very essence of what it means to be in communion, in community, in common, with one another.

Do you know what people talk about when they are dying?  We talk about love; pretty much exclusively.  When we come to the end of our lives and the conversation has narrowed down to, “What was the point of me?” people reflect on love.  It is true that dying people never talk about the unfinished business at work.  We talk about the unfinished business in our intimate relationships.  We talk about the loves that made us whole; the loves that gave us joy and meaning and pride…and the loves that broke our hearts.  We talk about the ones that we loved well and the ones we forsook.  We talk about the intimate love of family and dear friends, and the love for humanity that compels us to reach out to strangers in our professional and private lives.

People are made for love.  We are made to love.  The measure of a life well-lived is always and only a person’s courage in loving.

But though our lives are meant to be a love story, we learn along the way that all love stories end in tragedy.  Whether through choice or through death, someone always is left to grieve.

Leaving friends and family and home for school or work or marriage is a kind of a death.  Broken relationships are a death.  Divorce is a death.  The end of a life is a death.  The grief that goes with any death is heartbreaking.

Heartbreak hurts!  The feeling of ripping and then aching in our chest, the initial agony of waking up crying, being utterly consumed by the sense of loss, feeling hopeless.

My eldest daughter loaned me a novel recently.  It was a light read.  Nevertheless, just as even the most simple people contain great wisdom, so does simple reading.

“When you drop a glass of wine or a plate to the ground, it makes a loud crashing sound. When a window shatters, a table leg breaks, or a picture falls off the wall, it makes a noise.  But as for your heart, when it breaks, it’s completely silent. You would think, as it’s so important, it would make the loudest noise in the whole word or even have some sort of ceremonious sound like the gong of a cymbal or the ringing of a bell. But it is silent and you almost wish there was a noise to distract you from the pain.”  (“If You Could See Me Now” by Celia Ahern)

Isn’t that the truth?

When a heart breaks, it is completely silent. But loss is the price we pray for living into our purpose, which is to love.  Love, loss, longing; they are all of one piece.  Life.

In the months following my nephew, Mark’s sudden death at aged 7, none of us could have ever imagined that his parents would smile again.  But then, unexpectedly, like a rainbow arching over the deep, wild, mysterious ocean, something struck my sister-in-law funny one night at dinner, and she laughed.  We never stopped missing Mark, of course. His life and his love and his death shaped our lives and expanded our souls.  But his mother’s laughter was testimony that there is yet hope and joy and life to be had after loss.  Something good is always waiting to be had, eventually.  The resiliency of the human spirit is extraordinary.  The human capacity to hope beyond hope is truly amazing.

Every day, I keep company with men and women and children who are dying and with their families.  It can be a time of profound grace, even in the midst of deep sorrow. Time to look back, pay honor to, and close out a life is precious time.

There are four phrases that chaplains often offer to people who are dying and to those they love the most, to facilitate sacred conversations:

* “I love you.”
* “I am sorry for what has gone wrong between us.”
* “I ask your forgiveness for the part I had in any hurt between us.
* “I thank you for your role in my life.”

There is no need to wait for such sacred conversations.  We can have them at any time, and be blessed by the sharing.

I leave you with a reflection on love, from Dr. Peter Kreeft, from “The Turn of the Clock”

“What to say to the dying: the profoundest thing you can ever say to a dying person is: I love you.  Not even God ever said anything more profound than that.”

-###-

Rev. Rona Tyndall is the coordinator of spiritual care for Care Dimensions, formerly Hospice of the North Shore & Greater Boston.

100 Things That Must be Done by the Survivor

A couple of years ago, the incomparable Vera James, moderator of one of the online MSA-related support groups, posted a list of “87 Things That Must Be Done by the Survivor” upon the death of a spouse or loved one. Recently, Vera emailed me a list of “100 Things That Must be Done by the Survivor.”  Vera figured that the revision was done to make it a nicer-sounding number.

As suggested by the list-maker, it’s better if we all provide details about these 100 tasks well before we die so that our survivors will know what our wishes are and how to proceed.

I’ve copied the full list below.

Robin


 

100 Things That Must Be Done By the Survivor
Prepared In Every Way (preparedineveryway/blog)
2012

Many of these details can be planned ahead of time. By making these important decisions now, you can minimize the emotional strain that will be placed on your survivors.

Secure Vital Statistics: (required for burial permit)
1.  Name, address and phone number
2.  How long in state
3.  Name of business, address and phone
4.  Occupation and title
5.  Social Security number
6.  War Veterans Serial Number
7.  Date of birth
8.  Place of birth
9.  US Citizen
10.  Father’s name
11.  Father’s birthplace
12.  Mother’s maiden name
13.  Mother’s birthplace
14.  Religions name (if any)

Pay some or all of the following:
1.  Family burial estate
2.  Memorials
3.  Funeral director
4.  Interment Service
5.  Clergy
6.  Florist
7.  Clothing
8.  Transportation
9.  Telephone and telegraph
10.  Food
11.  Doctors
12.  Nurses
13.  Hospitals and ambulance
14.  Medicine and drugs
15.  Other current and urgent bills (mortgage or rent, taxes, installment payments)

Collect Documents (required to establish rights for insurance, pensions, social security, ownership, relationship, etc.):
1.  Will
2.  Legal proof of age or birth certificate
3.  Social Security card or number
4.  Marriage license
5.  Citizenship papers
6.  Insurance policies (life, health and accident, property)
7.  Bank books and credit cards
8.  Deeds to property
9.  Bill of sale of car
10.  Income tax returns, receipts or cancelled checks
11.  Veterans discharge certificate
12.  Disability claims
13.  Memorial park certificate of ownership

Decide and Arrange Within a Few Hours:
1.  Burial estate location and space
2.  Memorial type inscription
3.  Casket type
4.  Clothing for deceased
5.  Vault or sectional crypt
6.  Type of service (religious, military, fraternal)
7.  Special selection from scriptures
8.  Clergy to officiate
9.  Name of funeral director
10.  Place where service is to be held
11.  Time for funeral service
12.  Name of charitable organization to which donations are suggested in memory of deceased
13.  Providing information for eulogy
14.  Select names for pallbearers
15.  Music
16.  Clothing for you and children
17.  Preparation at home, including food for family and guests
18.  Extra chairs
19.  Transportation for family and guests, including planning funeral car list
20.  Checking and signing necessary papers for burial permit
21.  Providing vital statistics about deceased to newspapers.
22.  Providing addresses and telephone numbers for all interested people
23.  Answering innumerable sympathetic phone calls, messages, wires and letters
24.  Meeting and talking with funeral director, cemetery representative clergy, about all details.
25.  Greeting all friends and relatives who call
26.  Arranging for meeting relatives who call
27.  Arranging for meeting relatives who arrive from out of state at airport or railroad/bus station
28.  Providing lodging for out-of-town relatives
29.  Arranging for special religious services
30.  Check the Will regarding special wishes
31.  Order death certificate (multiple copies)
32.  Look after minor children

Notify as soon as possible:
1.  The doctor or doctors
2.  The funeral director
3.  The memorial park
4.  All relatives
5.  All friends (email?)
6.  Employer of deceased
7.  Employers of relatives not going to work
8.  Casket bearers
9.  Insurance agents (life, health and accident)
10.  Religious, fraternal, civic, veterans organizations, unions
11.  Newspapers regarding notices
12.  Attorney, accountant, or executor of estate

Additional Advice
:
1.  Business online – user names, passwords
2.  Banking online – user names, passwords
3.  Friends online – email, passwords
4.  Distribution of personal property
5.  Advise who they can trust to advise in their absence
6.  Tell about loans receivable/bartering
7.  Know where stock certificates are located
8.  Locate “free” insurance policies from banks, credit cards, AAA
9.  Complete an Advance Directive, Do Not Resuscitate
10.  Who has access to Safe Deposit? Where are keys?
11.  PINs for bank and other accounts
12.  Record information in something portable
13.  Discuss directions with your family
14.  Review this list regularly