Supporting, and getting support, from loved ones after a diagnosis

Though this newspaper article is about dementia, I think most of the concepts apply to everyone with a neurological diagnosis.

In Monday’s article in The Sacramento Bee, retired journalist Kent Pollock writes about his dementia diagnosis and how many with a dementia diagnosis struggle to receive support from their loved ones.

The article is here:

APRIL 17, 2017 8:00 AM
Supporting, and getting support, from loved ones after a dementia diagnosis
By Kent Pollock
Special to The Bee



“Anticipatory Grief and Ambiguous Loss” – Webinar Notes

Though the webinar described in this post was focused on dementia caregivers, the content of this webinar applies to all caregivers as it relates to grief and loss.  It may also apply to those coping with a neurological diagnosis as well since certainly grief and loss are part of the package.

This is a follow-up to last month’s post about a Family Caregiver Alliance ( webinar on anticipatory grief and ambiguous loss.  These two terms are defined by FCA as:

* “Anticipatory grief is the emotional pain and sadness that arises in advance of an expectant loss or death.”

* “Ambiguous loss is the confusing feeling of interacting with someone who is not fully present mentally or socially, as often happens to family caregivers who are closely involved with a person living with dementia.”

The webinar was recorded and is now available online:

Wading in Emotional Quicksand: The Powerful Role of Anticipatory Grief and Ambiguous Loss in Dementia Care
Family Caregiver Alliance Webinar
March 29, 2017

In the webinar, speaker Kay Adams, LCSW, shares seven rules for getting out of emotional quicksand of grief and loss, plus one bonus rule:

1. Don’t panic.
2. Get emotional relief.
3. Reassess/reevaluate frequently.
4. Lay back and relax…and breathe.
5. Take your time.
6. Use a stick (support person/people).
7. Take frequent breaks.
8. Laugh through your tears.

Brain Support Network volunteer Denise Dagan listened to the webinar recently.  Here are the highlights from Denise’s viewpoint:

In this webinar, speaker Kay Adams makes the point that in the case of long-term illness both the care recipient and care giver suffer many losses.  It is only human to grieve those losses as they occur, and each person’s grieving process will be different.  She offers some strategies to aid in the process, all of which require getting past the first stage of grief, which is denial.

Educating yourself about the long-term illness with which you are dealing allows you to anticipate what demands will be made upon you as a caregiver.  It is the best defense against the belief that you can do it all by yourself.  Not trying to care for someone all by yourself over the entire course of a long-term illness will help prevent burnout and is the cornerstone of a good self care strategy.

Gathering others to help both carer and caree from the very beginning is the best way for both care giver and care receiver to stay socially engaged and involved in those things you love for as long as possible.  It provides you both the emotional support needed to best deal with the grief of losses along the way.

Denise’s extensive notes from the webinar are copied below.  The notes include the short question-and-answer session.  “The Story of Rosie and Vince” is referred to within Denise’s notes.  See an earlier post for that story.



Denise’s Notes

Wading in Emotional Quicksand: The Powerful Role of Anticipatory Grief and Ambiguous Loss in Dementia Care
Family Caregiver Alliance Webinar
Speaker: Kay Adams, LCSW
March 29, 2017

Kay begins by giving a brief timeline of her work history and what brought her to working with dementia and grief, and the definitions of anticipatory grief and ambiguous loss.  She has several quotes from the recommended reading material which she shares throughout this talk.

As a practical example she reads “The Story of Rosie and Vince” about an older women who came into the clinic for cognitive testing due to memory changes.  Dementia ran in her family.  Her husband accompanied her to the appointment and had his own terminal diagnosis.  Rosie had been a successful professional and had been compensating well so her diagnosis was probable Alzheimer’s in moderate stages.

Consider that Rosie is grieving the impending loss of her husband due to his illness as well as the loss of herself to dementia, while Vince is grieving the loss of her wife’s ability to participate in their relationship and daily life as she had before her memory difficulties, along with the burden of caring for her and himself, both now with serious illnesses.

Signs and Symptoms of Anticipatory Grief:  Tearfulness, anger, loneliness, anxiety and depression, guilt, desire to talk or withdraw, fear, fatigue, emotional numbness, poor concentration, forgetfulness.

Recommended reading:
1. “Relentless Goodbye, Grief and Love in the Shadow of Dementia” by Ginnie Horst Burkholder.  Ginnie’s husband had Lewy Body Dementia.  The book started as a journal so it is a series of thoughts, experiences, etc.

2. “Rising Strong” by Brene Brown.

“Grief is the emotion we perhaps fear most.”  Three most foundational elements of grief are loss, longing and feeling lost.

* Loss of what could be
* Loss of what we thought we knew or understood about something or someone.
* Thoughts of:  This wasn’t supposed to happen.  This wasn’t how things were supposed to go.

* Not a conscious thing
* An involuntary yearning for wholeness, opportunity, for meaning
* For the opportunity to regain or even simply touch what we’ve lost
* Can come out of nowhere and be triggered by something you didn’t even know mattered.
* Speaker gained 30 pounds in 6 months between her dad’s diagnosis and death trying to fill the emptiness, loss, and longing.

Feeling lost
* Feeling your loved one is far away, uncertain, not sure what steps to take.

Grief requires us to reorient ourselves to every part of our physical, emotional and social worlds.  In caring for dementia we must do this repeatedly over the progression of dementia and losses in the abilities of our caree.

* The more difficult it is for us to articulate our experiences of loss, longing, and feeling lost, the more disconnected and alone we feel.

* Coping strategies— writing down experiences of heartbreak and grief.  Making clear to themselves what they were feeling, so they could articulate it to others without having to explain or justify their feelings.

If you speak with others about your grief it should be to those who get what you’re going through, not someone who has no clue.  If someone cannot relate, he/she is not helpful.

Stages of Grief (Elizabeth Kubler Ross)
* Denial
* Anger
* Bargaining/Guilt
* Depression
* Acceptance

[Denise’s note:  I would add since her book was published in 1969, it is understood these stages are not necessarily sequential, and over the many years caring for dementia (and other long-term illnesses) they will wax, wane, overlap, repeat, etc.  Be patient with yourself and others grieving around you.]

* Hoping the person is not ill
* Expecting the person will get better
* Convincing yourself that the person hasn’t changes
* Attempting to normalize problematic behaviors

* Frustration with the person
* Resenting the demands of caregiving
* Resenting family members who can’t or won’t help
* Feeling abandoned

* Wondering if you did something to cause the illness
* Feeling bad if you enjoy life, or feeling like a failure
* Wishing the person would go away
* Having unrealistic expectations of yourself… “I should have done _____ ”  Especially common to have promised never to put your loved one in a nursing home and feeling guilty that you have.

* Feeling overwhelmed by loss
* Crying frequently
* Withdrawing from social events of needing more connection with others
* Withholding (stuffing) emotions or displaying them more openly
* Women tend to feel more comfortable becoming depressed in expression of grief, rather than expressing them constructively.  Grief can also come out in erratic behaviors.
* Other symptoms can include: difficulty focusing, sleeping too much/too little, changes in appetite, increased irritability, feelings of worthlessness/helplessness/hopelessness, loss of interest or apathy, persistent sad or empty feeling.

* Learning to live in the moment & let go of the past
* Find personal meaning in caring for someone and railing the PLWD IS doing the best they can
* Embracing your fried instead of living in resistance
* Think of acceptance of home plate in baseball.  You run around the bases of denial, anger, bargaining, and depression and when you get to acceptance, you find some relief.
* Sadly, when caring for dementia you may grieve each loss separately as they happen one by one; bill paying, cooking, medications, dressing, eating, bathing, etc.

Quicksand (Emotional quicksand is the visualization concept of her grief talk.)
* Definition:  “Loose wet sand that yields easily pressure and sucks anything resting on or falling into it.”

Avoiding emotional quicksand starts by recognizing common quicksand areas:
* Receiving a diagnosis of dementia
* Loss of normalcy and time to yourself
* Loss or change in the relationship
* Loss of driving privileges and financial stability
* Loss of independence, and hope for the future that you had planned for.

Look for Ripples
* Be on the lookout for ground that appears unstable.  This requires looking ahead, not being in denial.
* Know that the grief is going to come.
* It’s not a matter of IF, but WHEN changes will be required to properly care for your loved one.
* It’s best to plan for these eventualities when you are not in crisis mode, and that requires acknowledgement of eventual diminished abilities on their part.

Test the ground in front of you with your walking stick.  Is there quicksand in front of you?
Your walking stick is a good friend, faith, support group, etc. to help you see the reality of the situation and offer emotional support.

How to get out of emotional quicksand; seven rules for survival:

1. Don’t panic.  Think of how thrashing about in quicksand makes you sink faster.
* Know that your feelings of anxiety, fear and overwhelm are normal.
* Find an outlet for your feelings and express them in an environment that feels safe.  Faith, or support group, especially.

2. Get emotional relief.
* If you are wearing something heavy (like a load of grief, guilt and regret), unstrap it immediately and drop everything.
* Understand that it is “real grief” that you need to work through.
* Figure out ways to “let go” so grief doesn’t stop you in your tracks and sink you.
* Daily relief suggestions: prayer, favorite TV show, coffee or tea break, meditation, exercise, a movie

3. Reassess/reevaluate frequently.
* If you feel your feet (or spirit) getting stuck…take steps backward and reassess before the quicksand takes hold.

4. Lay back and relax…and breathe.
* Sit down and lean back if your feet are stuck fast.
* Breathe deeply…it will help you remain calm and buoyant in hard times.  It actually helps you think better.

5. Take your time.
* Frantic movements will only hurt your cause.
* Take it slow so that the steps you do take really count when it matters.

6. Use a stick (support person/people)
* Carry a walking stick (a support person) any time you’re in quicksand country.
* It can be helpful to shift your focus from the anticipated decline or death of a person, to celebrating what you still have left.
* Cry and grieve the loss of what was, so you can move forward and be effective as a caregiver.

7. Take frequent breaks.
* Extracting yourself alone from quicksand can be exhausting.  Conserve your energy before you become too fatigued.
* Grief must be fully experienced before you can move on.  You need to take breaks and allow yourself ftp grieve the losses (and there are many!) along the way.
* Stay involved in your hobbies, faith, friendships, etc. to reduce stress and increase energy to be available for your caree.

Bonus rule 8. Laugh through your tears.
* It increases endorphins in your brain, which relieves pain and stress.  Caregivers have more cortisol (stress hormone) than others.  Endorphins balance the cortisol.

Being in resistance and in denial…only makes matters worse!

Reach out to others who understand and can help.  You can’t care for someone throughout the length of dementia alone.

Celebrate the good moments, and grieve what can no longer be – away from your caree, so you don’t increase their stress.

Use grief to build inner strength as care partners.

We ALL have our unique journey of grief.  Embrace it.

We must embrace pain and burn it as fuel for our journey.

Question & Answer Session:

Q: How can she help her siblings come to grips with mom’s dementia diagnosis, or must they come to acceptance in their own way?

A:  You can only gently, lovingly, nudge them toward acceptance by sharing your own experience and changes you are grieving about the changes in Mom.  Use “I” messages and your own reality to help them join you in the same place.  Every family member’s stage of grief is going to change over the course of changes in their mother, so be patient with everybody.

Q:  Well meaning friends and co-workers don’t seem to understand.  Visitors don’t see the worst.  Caregiving wife feels isolated.  How can she share with them what she’s going through?

A:  We each have our own unique grief journeys, and our society doesn’t discuss it or deal with it well.  Anticipatory and ambiguous grief is a new concept for many people.  Invite them to listen to what things are like from your perspective as their caregiver and what you’ve already lost in your relationship due to dementia.  If they can imagine being in your shoes, they will begin to understand and empathize.

Q:  Would it be a good idea to bring up anticipatory and ambiguous grief in my support group?

A:  Absolutely!  It is common for a caregiver to say, “Why should I feel sad?  He/she is the one with dementia.”  These people don’t realize they are grieving their loved one’s losses just as much as the person with dementia is grieving their own losses.  Making everyone aware that they are both grieving will reduce stress, bring people closer, eliminate ignorance of these types of grief, and help people work through their caregiving journeys.

Q:  In terms of quicksand and having something heavy (emotional baggage) you must drop.  That’s hard.  How to let go?

A:  Support groups, coffee with a friend, confession of your raw feelings whether to a person or your journal.  Educate yourself about the disease so you know what you’re dealing with and how to do the best you can.  Relieve these feelings daily in some way.

Q:  What are common mistakes people make when being thrown into the role of a dementia caregiver?

A:  Dealing with Alzheimer’s begins with memory issues, but that is only the initial symptom.  When given the diagnosis of dementia, you must understand that when the whole brain becomes involved there are more symptoms to come.  Underestimating the demands that will be put upon you and thinking you can care for someone by yourself is a mistake.  Learn what to expect and start gathering people along the way to help in as many ways as they can.  Both you and your caree will need them.

“Self-Diagnose Successfully” and Research Resources

Someone in our local support group sent me this article recently.  We’ve had quite a few individuals with neurological conditions or family members discover the diagnosis themselves rather than receiving a diagnosis from a physician.  In this article, “People with rare or baffling conditions offer tips on how to do your own research and work with doctors to find answers.”

I think tips and resources suggested by this article are great advice, even after you have a diagnosis you can believe in.

The general research resources suggested include:
* PubMed,
* CiteFactor,
* Wikipedia,  Especially for footnotes.

The research resources specific to rare diseases (defined as fewer than 200,000 Americans affected) include:
* Undiagnosed Diseases Network,
* Online Mendelian Inheritance in Man,
* National Organization for Rare Disorders,
* Genetic and Rare Diseases Information Center,

The tips on finding answers include:
* trust what you see
* follow your instincts
* make connections
* dig into the research
* separate good research from bad
* find a community
* work with your doctor
* don’t give up

Here’s a link to the article:

Self-Diagnose Successfully: Patients sometimes understand their baffling conditions better than their physicians. Learn how to build a convincing case and work with your doctor to find answers.
by Richard Laliberte

Neurology Now
October/November 2016
Volume 12 – Issue 5 – p 16–20



Be prepared to answer “What are your goals for your care?”

This Washington Post article from a couple of years ago is circulating again.  The article is titled “A doctor discovers an important question patients should be asked.”  The important question is:  what are your goals for your care?  I think this is a great question we should ask ourselves before we ever set foot in a doctor’s office.  If we are prepared to ask and answer that question at the beginning of every doctor’s appointment, perhaps we’d have more control over our own care and perhaps the outcome.

Here’s a link to the full article:

Health & Science
A doctor discovers an important question patients should be asked
By Mitch Kaminski
Washington Post
March 9, 2015



“7 in 10 Will Need Long-Term Care. Will You?” (NextAvenue)

NextAvenue ( has a description of ten scenarios that are lived by thousands, sometimes millions, of US adults.  They ask:  “Would you or your family be prepared if the circumstances happened to you?”

You can find the scenarios here:

7 in 10 Will Need Long-Term Care. Will You?
Try your hand at looking into the future to find challenges and solutions
March 21, 2017

The scenarios are things like “you develop Alzheimer’s,” “you develop Parkinson’s,” and “you experience several falls and must move to assisted living.”

“Before you send your spit to 23andMe, what you need to know” (STAT News)

Here’s a very helpful article from today’s STAT News ( about what 23andMe’s genetic reports can and cannot show.

Before you send your spit to 23andMe, what you need to know
By Sharon Begley
April 7, 2017



FDA allows 23andMe to sell genetic tests again (NYT article)

The FDA is now allowing 23andMe to sell genetic tests again.  I don’t believe the test looks for any alpha-synuclein, MAPT, or other tau-related genetic mutations so any genetic test from 23andMe won’t have any bearing on the disorders with the Brain Support Network community.  However, this is still big news for the genetic testing world.  According to the article, customers have to specifically ask to be tested for Alzheimer’s and Parkinson’s risk.

Here’s a link to today’s New York Times article on the development: Health
F.D.A. Will Allow 23andMe to Sell Genetic Tests for Disease Risk to Consumers
By Gina Kolata
New York Times
April 6, 2017Robin

ProPublica’s Vital Signs Project, including standing with federal health programs

ProPublica ( launched yesterday a project called “Vital Signs.”  You can access Vital Signs at no charge here:

In its announcement about the project, ProPublica says it “has accumulated a wealth of data about how medicine is really practiced in the U.S. We’ve got millions of data points on things we believe everyone should know about his or her providers, like whether they’ve been barred from federal health care programs, their prescribing and treatment patterns, and how much money pharmaceutical companies pay them for things like consulting and speaking.”

You can subscribe to email alerts when ProPublica obtains new information on something of interest to you.

ProPublica says:  “Our health care databases, including Dollars for Docs and Prescriber Checkup, have long been among the most popular features of our site, and are a key part of the mission of our data team — to help people use data to make better choices and live better lives. … New to this project is data on health care providers who have been kicked out of government health programs. For the first time, you’ll be able to see your provider’s standing.”

Vital Signs covers five general areas:
* Standing With Federal Health Programs
* Office Visits and Costs
* Relationships with Pharmaceutical and Device Companies
* Prescribing Patterns and Habits
* Surgical Performance

Sounds like this is worth checking out….


“Playbook For Managing Problems In Last Chapter Of Life” and

Kaiser Health News ( publishes a lot of great articles.  Here’s one from today about a “playbook for managing problems in the last chapter of your life.”

Dr. Lee Ann Lindquist, chief of geriatrics at Northwestern’s Feinberg School of Medicine, wondered if people could become better prepared for emergencies — such as a fall, being hospitalized, and a spouse dying or becoming ill — or if people could become better able to plan their futures if health concerns — such as dementia and not being able to keep up one’s home — compromise independence.

According to Dr. Lindquist’s research, seniors don’t do this planning for several reasons:  “I don’t know what to do, I’m uncomfortable asking for help, I’m not at immediate risk of something bad happening, my children will take care of whatever I need, and I’m worried I won’t have enough money, according to a research report published last year.”

To help address the need for planning around these “predictable problems” and the reasons why people don’t plan, Dr. Linquist developed a website,  The website focuses on three issues — hospitalizations, falling, and developing dementia.

The user is asked a series of questions to obtain preferences.  Here are some examples from the homepage of

Do you know…
* What your rehabilitation options are after a hospitalization?
* How to connect with local services and resources such as in-home care, Villages, and skilled nursing facilities?
* What steps you can take to help prevent falls?

Communication with family members and management of finances are large parts of the website.

Though the focus is on being prepared to turn 80, 90, or 100, I think this website offers an easy-to-use tool for all families coping with neurological disorders, or anyone wanting to share preferences with their healthcare agent.

Certainly looks worth checking out!

The full article is copied below.



A Playbook For Managing Problems In The Last Chapter Of Your Life
By Judith Graham
Kaiser Health News
March 9, 2017

CHICAGO — At least once a day, Dr. Lee Ann Lindquist gets an urgent phone call.

“Mom fell and is in the hospital,” a concerned middle-aged son might report.

“Dad got lost with the car, and we need to stop him from driving,” a distraught middle-aged daughter may explain.

“We don’t know what to do.”

Lindquist, chief of geriatrics at Northwestern University’s Feinberg School of Medicine, wondered if people could become better prepared for such emergencies, and so she designed a research project to find out.

The result is a unique website,, which helps older adults plan for predictable problems during what Lindquist calls the “last quarter of life” — roughly, from age 75 on.

“Many people plan for retirement,” the energetic physician explained in her office close to Lake Michigan. “They complete a will, assign powers of attorney, pick out a funeral home, and they think they’re done.”

What doesn’t get addressed is how older adults will continue living at home if health-related concerns compromise their independence.

“People don’t want to think about the last 10 or 15 years of their life, and how they’re going to manage,” Lindquist said.

This isn’t end-of-life planning; it’s planning for the period before the end, when health problems become more common.

Lindquist and collaborators began their research by convening focus groups of 68 seniors — mostly women with an average age of 74. Nearly $2 million in funding came from the Patient-Centered Outcomes Research Institute, created under the Affordable Care Act.

Investigators wanted to know which events might make it difficult for people to remain at home. Seniors named five: being hospitalized, falling, developing dementia, having a spouse fall ill or die, and not being able to keep up their homes.

Yet most participants hadn’t planned for these kinds of events. Investigators asked why.

Among the reasons seniors offered: I don’t know what to do, I’m uncomfortable asking for help, I’m not at immediate risk of something bad happening, my children will take care of whatever I need, and I’m worried I won’t have enough money, according to a research report published last year.

Developing the website came next. Lindquist and her team decided to focus on three issues the focus groups had raised — hospitalizations, falling and developing dementia — and to include sections on communicating with family members and managing finances.

A group of senior advisers rejected the first version: the typeface was too small; the design, too cluttered; and the content, too complex. They didn’t want to be overwhelmed with information; they wanted the material on the site to be practical and concrete.

The final version “forces people to sit down and think about their future in a very helpful and non-threatening way,” said Phyllis Mitzen, 74, who worked on the project and is president of Skyline Village in downtown Chicago, a community organization with about 100 older adult members.

An individual going through the material is asked to consider a series of questions after examining explanatory information and watching short videos of seniors illustrating the issues being discussed. For instance, which rehabilitation facility would you like to go to if you need intensive therapy after a hospitalization?

Who will take care of your pets, mow your lawn or shovel the snow from your sidewalk while you’re away? Who can collect your mail, check on bills to be paid and get medications for you when you return home?

If you begin having memory problems, who can help you manage your bills and finances? Are you willing to wear a medical alert bracelet if you start getting lost? Would you be willing to have a friend or relative check on your driving or have a formal driving evaluation?

If you require more assistance, are you open to having someone come in to help at home? Would you prefer to live with somebody — if so, whom? Would you be willing to move into a senior community?

The goal is to jump-start conversations about these issues, Lindquist said, just as seniors are encouraged to have conversations about end-of-life preferences.

Those looking for deep dives into topics highlighted on the site will have to look elsewhere. Resources listed are spare and some of the material presented — for instance, how Medicare might cover various services — is overly simplified, noted Carol Levine, director of the United Hospital Fund’s Families and Health Care Project in New York City.

Her project has prepared a much more detailed, comprehensive set of guides for family caregivers ( about issues such as home care, doctors’ visits, emergency room care, rehabilitation and what to expect during and after a hospitalization. Those materials are full of useful advice and can flesh out issues raised on the Northwestern website.

Those wanting to know more about falls can consult materials prepared by the U.S. Centers for Disease Control and Prevention and the National Institutes of Health.

For dementia, the Alzheimer’s Association and the NIH are good places to start.

As for next steps, Lindquist contemplates disseminating PlanYourLifespan more widely, translating it into Spanish if funding can be secured and possibly expanding it to include more topics.

The point is to “give seniors a voice,” she said. Now, if an older woman breaks a hip and is rushed to surgery, “loved ones run around and usually make decisions without her input — she’s usually too out of it to really weigh in. That doesn’t have to happen, if only people would consider the reality of growing older and plan ahead.”

“Dying to Know: What Patients/Families Want to Know about End of Life Care”

Last week, the Stanford Health Library hosted a lecture on end-of-life care, titled “Dying to Know: What Patients and Families Want to Know about End of Life Care and Issues.”  The speaker was Stanford oncologist Dr. Kavitha Ramchandran, who spoke for about 45-minutes and answered questions for another half hour.

[Update:  The recording is now available on this webpage of the 2017 video library:]

Brain Support Network volunteer Denise Dagan joined the lecture via live webcast.   Here’s her report on the highlights of the lecture:

Coincidentally, Dr. Ramchandran covered some of the same information as a couple articles Robin sent recently — the difference between hospice and palliative care, and how to communicate effectively with your doctor about treatment/procedure options.  So, I’ll only highlight a few things here, but it is well worth viewing the whole webinar, as she does speak a bit about the dying process as well, and the audience had a number of interesting questions.

For end of life care conversations, tell your doctor your personal goals for the quality of life or level of recovery you hope to have after a treatment or procedure, and ask which option will best achieve those goals.

Your family may expect you to pursue every curative therapy, while you are exhausted and just want to be able to, “eat ice cream and watch football.”  Even if the family is surprised to hear this, if that’s where you are in your journey, you need to tell your doctor.  It will change the course of the whole conversation with the doctor, and your family.

Interestingly, Dr. Ramchandran views hospice as very flexible.  She recommends it for patients needing good in-home symptom management for a month or so, when she wants them to be in really good shape for the next round of chemo.  If they are, and are willing to try the new chemo, she has them discharged from hospice and begins curative treatment again.  If they aren’t in such good shape, or choose not to continue chemo, they stay in hospice, but they are usually happy about the level of care they are receiving because it is all about making the patient as comfortable as possible.

Hospice will discharge you if your condition improves.  My Dad had Lewy Body Dementia and was in hospice twice for about two years each time.  It was a Godsend.  In between he was in a transitions program that followed his progress and ensured he was readmitted to hospice when his health declined.  Not all hospice programs are created the same.  I recommend a non-profit program.  Get recommendations from your doctor, support group members, friends and family, and interview a couple before you enroll.

Dr. Ramchandran spoke some about the dying process.  Her analogy is to think of the birthing process and a new mother’s idealized expectations about who will be there, how the family will document the event, having a doula, etc.  In reality, neither birth nor dying ever happen in quite the way you want, so you may need The Serenity Prayer:  God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.

Denise’s full notes are below.



Denise’s Notes from

“Dying to Know: What Patients and Families Want to Know about End of Life Care and Issues”
Stanford Health Library
March 2, 2017
Speaker:  Kavitha Ramchandran, MD, oncologist, Stanford

Disclosure is the action of making new or secret information known.  Families feel they can’t get a straight answer to, “How much time do I have?” even though doctors know information reduces anxiety. Most people do want to know what to expect about their treatment, prognosis, and especially pain. When they know, they make better decisions about how to spend that time and choices about their care.

Why don’t doctors talk about end of life?
Because it makes them uncomfortable to talk about not being able to help anymore.  It means you will die, and that’s sad, even for them.  Doctors don’t always know the prognosis.  Especially with new treatments, doctors don’t know how well it will work.

Now that you know, what comes to mind?
– What is dying process like?
– How much of a loss of control will I have over my body, my decisions, my quality of life, my pain, etc.?
– How will my treatments and death affect those I love?
– How will others react to me if I lose my hair, are unable to speak, or when I am the one who’s dying, etc.?
– Will I be isolated during treatment, hospice, or death?
– What is the meaning of my life, now that I can see the end?

Do I have a say in where I die, in having every treatment available, in treating my pain effectively, etc.?  People like to be in control.

Goals of Care / Informed consent – means does your health care meet your personal goals?
– Good health care should ensure education and understanding – ask, tell, ask should be the process for the conversation.  One problem with the way conversations usually go, is that the doctor is speaking medical-ese, and the patient does not understand.  When the patient doesn’t understand, they don’t know what questions to ask, so they are still in the dark after they talk with their doctor.  The doctor should:
– ASK what you understand about your condition,
– then have you TELL them what you understand,
– finally ASK what questions you still have.

– Another way to make sure both the doctor and patient is on the same page is to ask the patient what their expectations are/what they still want to be able to do, following a recommended treatment or procedure.

– Ask your doctor for a concrete recommendation, rather than them giving you percentages and statistics about several options.  Hold their feet to the fire for an answer of which they actually recommend.  For them to evaluate the options with your goals in mind, you need to tell them what’s important for you to be able to do after a procedure or treatment.  Without that information they are guessing at which option is best for you.

Advance Directive for Healthcare is a legal document to designate your medical decision maker, and to document code status.  It should be coupled with the POLST form for those who choose DNR, because it won’t be available with your decision maker at the place of emergency where EMTs are working.  POLST is for EMTs.  Keep it on you or display it prominently in your home.

End of Life Options Act / Death with Dignity Act is now in 5 states.  For your application to qualify, you must:
* have less than 6 months prognosis
* be able to administer the life-ending medication on your own
* have the approval of two physicians
* be over 18-years-old
* be of sound mind

Hospice provides care for patients who are seriously ill.  If they say I do not want to be in pain and will take sedation not to be in pain, it is hospice’s highest priority to do that, even if the patient’s life is somewhat shortened in the process.  It is called palliative sedation.

Palliative care has been equated with end of life/hospice care, but it should not be.  It is caring for anyone with serious illness following or during active treatment.

Palliative care early on improves quality of life, and improves survival.  Probably because, if you’re focused on the next curative treatment you may not tell the doctor that you’re not sleeping, or other peripheral symptoms.  Treating these bothersome peripheral symptoms helps you be strong enough for the curative therapy (chemo, surgery, bone marrow transplant, etc.)

Hospice is one arm of palliative care.  To qualify you must:
* have a prognosis of 6 months or less
* refuse curative treatment (although all other chronic or acute illness is treated)
* agree that pain & symptom management (of all your ailments) is the goal
* understand it doesn’t change your insurance
* understand it is not a place, but those who come to you wherever you are (home, skilled nursing, palliative unit at the hospital)

Good healthcare walks with you from curative & palliative care, followed by hospice care, then death and family bereavement care.

The Dying Process:
Think of the birthing process and all a new mother’s expectation of who will be there, filming the event, a doula, etc.  Neither birth, nor dying ever happen in quite the way you want, so you may need the Serenity Prayer:  God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.

Give me the details…  What will I experience?  Is it be scary?  How will it effect my kids, my husband? Sometimes the patient doesn’t want to know, but the spouse does. Doctors only know so much, but they can answer some questions.

People are most afraid of pain.  It can usually be controlled, 80% of the time.

There may also be secretions, restlessness, confusion.  It can be upsetting for family members.  Its very sad to see the person they knew slipping away.

What is the body doing?
– Shutting down:  skin feels cool, clammy; decreased urination, no appetite, no need for fluids; being in bed is normal; sleeping a lot is normal

Question & Answer:

Can EMS check for troponin levels to tell if it’s a heart attack?
Hospital, because it takes time and a lab.

Death with dignity act and whether starving yourself is a peaceful way to die if you can’t get the prescription?
Each person has their own view of what is suffering, so they can stop eating.  That can take weeks, especially if they’ve just been in the hospital with loads of fluids from IVs.  Those who use the death with dignity act don’t want the dying process.  They want control over the timing of their own death.  If they ask for the prescription because they are afraid of pain the doctor should address how well pain can be managed in their situation.

Is palliative care a new specialty?  Why is palliative care sometimes offered in the hospital and sometimes not?
Palliative care is the new ‘old’ medicine is, “Care always, cure sometimes.”  A palliative care clinic is a new thing.

What is the name of the most popular aid in dying medication today, who makes it, and how do you order it?
California is trying a few different versions because some are too expensive for insurances to be willing to cover it.  Only a few pharmacies are filling it, right now.

Is there a book on how to counsel families through an advance directive?
The conversation project website walks you through preparing an advance directive.  The letter project has patients and families write a letter to their doctor about their wishes.
Hard choices for loving families is a good book.

It’s a burden to loved ones if you have a serious illness and are being cared for at home.  The circumstances can be undignified.
Alternative is skilled nursing, but asking the patient if they mind being in the middle of the living room in a hospital bed, etc. will help get everyone on the same page.  Sometimes patients continue to try curative therapies because they feel the family expects them to.  Having a frank conversation about what the patient wants is important.

If 80% of pain can be managed in the dying process, what about the 20%?
Admission to a clinic for pain specifically, an epidural, if those fail they use sedation which hastens death somewhat.

Does palliative sedation need to be in an advance directive?
No but the conversation about sedation should happen with family so they know your wishes as your decision maker.  That helps the doctor, too, because they don’t want to assume one way or the other.

So many people are living into their 90’s and they keep coming into the ER, so how do you handle that?
It would be nice to re-examine home-based care.  That is why some doctors recommend hospice, because it brings care to your home.  When the same person has been into the ER a few times, it usually means things are not going well at home, so setting up hospice for them can really help them feel better and stay out of the ER with that added expense and hassle.  The POLST form has multiple components but it is basically a home-based DNR.  It must be signed by a doctor or nurse practitioner.

Are all physicians bound by the end of life options act?
No.  It is hard to find a doctor that will do it.  Most clinics have designated one physician to handle all requests because most don’t want to deal with it.  The Ethics Team can start the process for you at Stanford.

Who qualifies for palliative care?
People with significant symptom management need, especially with a psycho-social need with their family. A palliative care team includes doctors, nurses, social workers, clergy, psychologists

Have people stopped eating and drinking to hasten the end of their life, or an overdose of morphine?
Yes, she has known people who have stopped nourishment, but most patients at Stanford are looking for cures.  Oncology doctors have been overdosing morphine for decades before the End of Life Options Act was passed.  She believes in having the conversations with families early and often to meet the family’s specific goals.

When people change settings you lose a team you trust and have to adjust to a new healthcare team.
Yes.  Sometimes nobody is leading the team.  The speaker asks patients who their point of trust in the new place.  Sometimes it’s a nurse practitioner, but someone who keeps track of their care and can communicate with the facility.

Can you request palliative care in the hospital or at home before hospice.
Yes.  Hospice agencies may do the palliative care at home (bridge programs) but they may not be able to do as much as you want them to do under that type of program.

If you develop a urinary tract infection under hospice, will they treat it and take you go back to the hospital?
Yes, they would treat it because that would make the patient feel better.  They would probably not take you back to the hospital unless treatment at home isn’t working.  Hospice will not treat the underlying diagnosis for the hospice care (cancer, heart failure, etc.) Hospice is not a one-way street.  If you improve you will be discharged from hospice.  If/when you decline again, you will be readmitted. Average time in hospice is 3-4 days because people are reluctant to admit they are nearing death.  It should, instead, be the best home-based symptom management.

Friend alone with stage four cancer who knows nothing about palliative care.  How to tell him?
He should ask his primary care physician for a palliative care referral.  The speaker’s clinic prefers to begin care early on in cancer treatment so they know them throughout the course of their disease treatment.  Familiarity improves palliative care.