“Little Wished-for Deaths” (beautiful caregiving story)

This is a beautiful story about a woman who cared for her 90-plus year old grandfather with Parkinson’s Disease and dementia.

Excerpt:

“Because grief, like death, doesn’t adhere to our constructs. The wished-for deaths of ailing loved ones doesn’t make them any less loved. It only means we hoped for an end to suffering, on both accounts. And deaths that are supposed to be small can sometimes feel big. … The funeral commemorated a life that spanned nearly a century, putting those four years into a birds-eye perspective. They were sometimes burdensome, yes, and sometimes beautiful, but only a small portion of a rich and varied life: of his and mine both.”

The full article is here:

www.nytimes.com/2019/10/11/well/family/little-wished-for-deaths.html

Little Wished-for Deaths
by Mary Pembleton
October 11, 2019
New York Times

Robin

“Common Myths Of Hospice Care Debunked”

This article is about five of the common myths and misconceptions associated with hospice care. Many are reluctant to learn about hospice until they are in need of the service leaving a gap in understanding which makes the decision to start even more difficult. The five common myths are as follows:

  1. Hospice places a time limit on patient stays and hastens death.
  2. People have to go to hospice centers in order to receive hospice care.
  3. Hospice care requires you to stop taking medications.
  4. Hospice depends on sedation as a major way to manage patients’ pain.
  5. Once you’re enrolled in a hospice program, there’s no turning back.

To learn more about each see the full article below:

https://www.forbes.com/sites/nextavenue/2015/02/25/common-myths-of-hospice-care-debunked/#ef8268645277

Nine brain donations in nine days! Amazing generosity towards medical research.

Brain Support Network has helped nine families succeed in donating a loved one’s brain….in nine days.  That’s an amazing display of generosity towards medical research from individuals and their families.  We thank every family and party involved.  That’s a record for us!

If you are interested in making arrangements for your brain donation or a family member’s brain donation, we encourage you to do so once hospice is involved.  Or once there’s been a major hospitalization.

See:
www.brainsupportnetwork.org/brain-donation

Robin

 

“Palliative Care: Planning for the Road Ahead” – Speaker Notes

The Parkinson’s Association of Northern California (parkinsonsacramento.org), based in Sacramento, held its annual conference in late October 2017.  The video from the conference was posted online earlier this year.

Brain Support Network volunteer extraordinaire Denise Dagan has been watching the recordings of some of the sessions, and sharing her notes.

This blog post contains notes that Denise took while watching the recording of Nathan Fairman, MD, a psychiatrist at UC Davis.  Dr. Fairman spoke on the topic of palliative care.  There is nothing about this talk that is Parkinson’s-specific.  The information applies to us all.

Denise liked two metaphors that Dr. Fairman shared during his talk. The metaphors helped make his points about what palliative care is and why we want to make our end of life preferences known in advance.

Denise says:

“His first metaphor is thinking of life as a road into
the distance.  We can see clearly what is along the road near to us,
but in the distance things are unclear.  Similarly, we can see all the
elements of our lives clearly in the present and near future but not
so clearly in the distant future.  When we are diagnosed with a
serious or long term illness our outlook becomes unfocused.  Dr.
Fairman says the job of a palliative care physician is to help us see
our future clearly again.  He then gives us an excellent description
of what palliative care is and is not, as well as how it applies
specifically to those with Parkinson’s disease.”

“Dr. Fairman’s second metaphor is that our lives are a story we write
for ourselves.  Making our end of life preferences known by talking
with our family and physicians, filling out a POLST and advance
directive is outlining the last chapters of our lives so that they
play out the way we prefer and we are not at the mercy of decisions
made by others.”

If you need more information about what palliative care includes
beyond what is contained in this email, check out
getpalliativecare.org.  That’s one of several resources mentioned near
the end of Dr. Fairman’s talk.  And ask your primary care physician,
neurologist, or other physician how palliative care can help you or
your family member and obtain a referral to a palliative care program.

Robin


www.youtube.com/watch?v=VvaSVuYhNjc

Notes by Denise Dagan, Brain Support Network Volunteer
April 2018

Speaker:  Dr. Nathan Fairman
Topic:  Palliative Care: Planning for the Road Ahead

Conference hosted by Parkinson Association of Northern California (PANC)
October 2017
Afternoon Session 1, Part 1

1st of 2 metaphors:  We think of our life as a journey or road ahead.
We can clearly see what is right ahead of us, but not what’s in the
distance, or around a bend or into the mountains.  And yet, each of us
has a sense of what’s ahead until we are diagnosed with a serious or
long-term illness, when our outlook becomes truly unfocused.  The job
of a palliative care doctor is to help us see our future clearly,
again.

Objectives of this talk:
1. Palliative Care 101
2. Roles for Palliative Care in Parkinson’s disease
3. Advance Care Planning 101

What is Palliative Care?
There is a distinction between “disease” and “illness.”  To understand
this makes it easier to have an effective relationship with your
doctor.  The distinction is:
* Doctors diagnose and treat disease.  The disease is what happens to
your body in a pathological sense.
* Patients experience / suffer illness.  Illness is how disease
affects who you are, your functioning in life, your relationships and
the path you are on.

Doctors can understand disease without knowing the patient at all.
You cannot understand an illness without the patient.

Dr. Fairman showed a Venn diagram in which a disease expert circle
(doctor) and an illness expert circle (the patient) overlap.  Both
doctor and patient need to respect one another’s expertise and work
together to best treat symptoms or achieve a good recovery.

Total Pain is physical, social, psychological, and existential.
Cicely Saunders was a nurse in London in ‘50s who worked in a cancer
ward.  She was tasked with alleviating cancer pain, which is very
difficult.  She found high dose opioids were very effective for
managing oncology pain.

She also discovered when you suffer a serious illness you suffer in
many ways leading to her concept of Total Pain.  Proper treatment of a
serious illness needs to incorporate a team which is able to address
all aspects of suffering: physical, social, psychological, and
existential.  This is a foundational concept in palliative care.

Palliative Care IS:
* specialized care for people with serious illnesses
* focused on providing patients with relief from the symptoms, pain,
and stress of a serious illness – whatever the diagnosis
* strives to improve quality of life for both the patient and family (goal)
* provided by a team of specialists who work with a patient’s doctors
to provide an extra layer of support (led by a doctor and including a
nurse practitioner or nurse, chaplain, pharmacist and working closely
with physical therapy, occupational therapy, speech therapy and
disease experts).
* appropriate at any age, and at any stage of a serious illness
* provided together with curative treatment or as the sole focus of care

Some of the myths are exposed in this definition like:
* Palliative care is only appropriate at the end of life
* Patients can’t continue with disease-focused care while receiving
palliative care

Basic Tenets of Palliative Care
1. Illness experience (person-centered / family-oriented)
2. Total Pain (interprofessional)
3. Preserving quality of life and function
4. Alignment of plan of care with goals of care (we don’t want to do
things to you, we want to do things for you)
5. Time-limited therapeutic trials.

Levels of Palliative Care
* Primary Palliative Care
— ALL CLINICIANS (good old-fashioned doctoring)
— attention to whole-person / family concerns
— treatment rooted in understanding of illness experience
— clarifying basic goals of therapy
— attention to symptom burden and quality of life

* Secondary Palliative Care
— Sub-specialist consultant teams (MD specializing in palliative care
+ RN + SW + Chaplain)

* Tertiary Palliative Care
— Research, Education about palliative care

What are the roles for Palliative Care in Parkinson’s Disease? There
are many overlaps between managing Parkinson’s disease and palliative
care:
1. Common goals: maintaining quality of life & function
2. Common means: multidisciplinary models (it takes an
interdisciplinary team for both)

There are a couple ways to think about the trajectory of Parkinson’s
disease.  At several points along that trajectory there are
opportunities for palliative care.
1. At diagnosis there is intense need for education about symptoms,
treatment options and prognosis
2. Identifying support resources
3. Initiating advance care planning discussions
4. Addressing distressful symptoms (especially non-motor)
5. Assessing caregiver distress / role challenges
6. Clarifying goals (iteratively, as goals change over time)
7. Facilitating transitions in care
8. Aligning plan of care with goals of care
9. Supporting loved ones through bereavement

Advance Care Planning
* Anticipating needs for future care: Who will provide care? Where
would you prefer to live?
* Anticipating major interventions / milestones, particularly tricky
issues to decide upon that are best discussed ahead of the need to
make a decision, like:
— artificial nutrition
— institutionalization
* Supporting autonomy and surrogate decision-making / healthcare
power-of-attorney

Attention to Caregivers
* Caregiver as expert
* Participation in decision-making, goal-setting
* Respite resources / opportunities
* Bereavement support (usually provided through hospice)

Got Advance Care Planning?  2nd metaphor – your life as a story. This
room is filled with stories.  Each one is unique and personal.  The
stories may be sad, tragic, heroic, inspiring.  You are the author and
main character but there are supporting characters, a plot, a setting,
conflict and conflict resolution, acceptance of unresolved conflict.

Think of advance care planning as a process to develop the last
chapters of your story.  Each of us has in mind (even if we haven’t
though much about it) what our last chapters look like.

What is Advance Care Planning?

What IT’S NOT:
– the story
– a document
– scary
– something you should put off.

IT IS writing an outline for the last chapters of your story… so the
story plays out the way you want.

Why does it matter?  What people WANT is often not what people GET

What people WANT in the last weeks or days of their life:
Dr. Fairman showed a photo of a man receiving hospice care at home.
There is a great dane, a schnauzer, and a cat on the hospital bed with
the man.  Most people want something like this photo and describe that
they would like to
* live life to the fullest (“fix” disease, if possible + alleviate suffering)
* 90% believe it is the family responsibility to provide care
* 90% prefer to die at home

What people GET:
Dr. Fairman showed a drawing of a hospital bed without showing the
patient’s face, a TON of equipment around and the doctor headed out
the hospital room door.
* many of us die of diseases that are ‘unfixable’.  We need
alleviation of suffering at end of life.
* only about 23% die at home
* about 77% die in institutions (53% in hospitals, 24% in nursing homes)

Writing the outline for the end of your story…so that it follows the
script you have written.

What is Advance Care Planning?  The practical parts:
1. Advance Directive – if you should have a sudden, traumatic event
and cannot speak for yourself or are in no position to make decisions,
it makes your wishes known and explains how you want to be cared for.
2. POLST – Physician Orders for Life Sustaining Treatment.  This is a
form you keep this at home.  How you fill it out tells EMTs how to
treat you if someone calls for medical help to your home.

The important parts:
1. Talk about it with your loved ones and health care providers
2. It’s a process (revisit and revise periodically)
3. Expect the unexpected

Things to Think About When Confronted With Medical Decisions. Having
a palliative care physician on the team at this point can provide the
patient and family perspective, particularly about what a difficult
recovery or poor outcome might look like.  Ask your doctor:
* Will this make my life better, or longer?  If the answer is neither,
the doctor should probably not be recommending it to you.  If the
answer is one or the other, your input will help the doctor understand
what trade-offs are important to you.
* If this doesn’t work, what can I expect?  If plan A doesn’t work,
what does plan B look like?

Ask yourself:
* What does quality of life mean to you?  If your time were short,
what would matter most?  What would a good day look like?  If you can
communicate this to your doctor, they can help you achieve these
goals.
* What worries you most about the future?  What outcomes are
unacceptable?  What are you willing / unwilling to sacrifice?
* If we can’t achieve your Plan A, what is your Plan B?

Things to Help You

Books:
Being Mortal: Medicine and What Matters In The End, by A. Gawande, 2014
Dying Well: Peace and Possibilities at the end of Life, by I. Byock, 1998
The Conversation: A Revolutionary Plan for End of Life Care, by A.
Volandes, 2016

Websites:
ACP Decisions (www.acpdecisions.org)
PREPARE (www.prepareforyourcare.org)
Get Palliative Care (www.getpalliativecare.org)

The Conversation Project (www.theconversationproject.org)
Coalition for Compassionate Care of California (www.coalitionccc.org)

Things to Do (a summary)
Preparation:
– Consider the “Things to Think About”
– Review the “Things to Help”
Discuss your preferences and priorities with loved ones
Complete documents, including:
– Advance Directive, POLST
Discuss your preferences and priorities with your physician (and a
palliative care physician)
Repeat as needed

Good stories have good endings…how will the end of your story go?

“It’s Time to Have a Conversation About Your Health Care Decisions”

In honor of National Healthcare Decisions Day, which is coming up next week (April 16th), we are sharing a blog post from last year about having a conversation about your healthcare decisions.  The blog post is from Transition Aging Parents (transitionagingparents.com), a website started by a woman who was a caregiver to her mother.

Why is it important for us to start a conversation with our families and physicians about our healthcare decisions?  Because we cannot count on:
a) being able to communicate your preferences at every juncture, or
b) that the medical community will make the same choice you would, depending on the circumstances.

Two useful websites are mentioned in the blog post:

#1 – National Healthcare Decisions Day website, nhdd.org.  Lots of resources because “it is never too early to talk about your health care preferences and you do not have to figure it out on your own.”

#2 – “Hello” conversation game, commonpractice.com/hello.  This is an “easy, non-threatening way to start a conversation with your family and friends about what matters most to you.”

Robin

=====================

www.transitionagingparents.com/2017/04/19/its-time-to-have-a-conversation-about-your-health-care-decisions/

It’s Time to Have a Conversation About Your Health Care Decisions
by Laura E. Bender, guest blogger
Transition Aging Parents
April 19, 2017

Conversations about the end of your life can be scary, sad or awkward. But these conversations also can be comfortable.

A few years ago, on a flight from Denver to Philadelphia, the woman seated on my left asked me what I did for work. I assumed my response would kill the sociable dynamic of our conversation if I didn’t choose my words carefully. I’m a palliative care researcher and, at the time, I was reading detailed patient death notes in medical records and talking with family members of recently deceased veterans about the care they received in their last month of life.

“I study the experiences of people dying and the choices people face at the end of their life,” I told her.

Most people would quickly respond with a degree of uneasiness, saying how sad my work must be, and then they find a way to change the conversation. This woman was refreshingly different. She dove into how important she knows my work is and how she is confident in the choices she has made for herself. I learned she was perfectly healthy and vibrant. She didn’t work in a health care related field, but she was clear when she did and did not want a resuscitate order.

Many people rarely have such a casual conversation, let alone any conversation at all about advance care planning and end-of-life choices. But now is a good time to think about that decision by using the many free resources available for National Healthcare Decisions Day at nhdd.org.

I confidently can say that people often don’t know that they even have choices. Many of the people I have spoken with assume they will get the type of care they want wherever they are. If a person has a condition so severe that he or she is unable to communicate, doctors, family members, friends, and, even, sometimes state and federal regulations dictate what happens. Any disagreement may prolong decision-making and possibly increase the chances of suffering. This confusion and conflict that can arise during difficult times can be eased with preparation.

Educational barriers often result in inadequate end-of-life care conversations. The NHDD website provides links to official legal documents for your state, as well as games, such as “Hello” (commonpractice.com/hello), a conversation game about “living and dying well” that can be played by anyone of all ages. NHDD reminds us that it is never too early to talk about your health care preferences and you do not have to figure it out on your own.

I long to live in a world where there are people like the woman on the plane who feel empowered to discuss these important decisions. Show love for yourself and those you love to live the best life all the way through to the last moments.

Laura E. Bender is a Ph.D. student in health services research at the University of Washington School of Medicine.