MD’s advice about getting “successful medical care” in and out of the hospital

This article in yesterday’s Washington Post is about an MD whose wife ended up in the hospital.  He learned some lessons “about surviving the American health-care system.”

He makes four points in this article:

* Speak up.
* Don’t be afraid to ask for a specialist.
* Don’t feel bad about asking to speak with a patient advocate.
* Share your health challenges with others and don’t stop searching for help.

Here’s a link to the article:

www.washingtonpost.com/posteverything/wp/2016/01/25/as-a-doctor-i-thought-i-knew-how-to-treat-my-patients-then-my-wife-ended-up-in-the-hospital

PostEverything
As a doctor, I thought I knew how to treat my patients. Then my wife ended up in the hospital.
Here’s what her illness taught me about successful medical care.
The Washington Post
By Joseph Ladapo
January 25, 2016

Robin

 

Article about Oncologist Using Oregon’s Dying with Dignity Legislation

Yesterday, I received this email from long-time local support group member Denise Dagan.  She’s referring to an article in “The Week,” which is an excerpt from a longer article in the January 2016 issue of “Harper’s Magazine.”  The articles are about a medical oncologist’s use of the Dying with Dignity law in Oregon.  Then the oncologist is diagnosed with cancer.  Denise says that despite a couple of errors, the excerpt is “a well written reminder that we should all think about what is important to us when it comes to end of life care and/or treatment.”

In her email, Denise also discusses for-profit hospice and non-profit hospice, plus Dr. Gawande’s book “Being Mortal.”

Thanks to Denise for sharing!

Robin

————————————————————–

From Denise Dagan:

The Week magazine has a nice excerpt from a Harper’s Magazine article about an oncologist using Oregon’s dying with dignity legislation.  It doesn’t mention palliative care; and it should.  [Perhaps the full length article does.]  It also implies, in the second paragraph, that you can’t die at home if you are enrolled in hospice care, which is patently false.  Otherwise, it’s a well written reminder that we should all think about what is important to us when it comes to end of life care and/or treatment.

A more fully explored text on this topic is Being Mortal: Medicine and What Matters in the End, by Atul Gawande.  The first half of the book mostly explores the evolution of housing and assisted living options for seniors and the disabled.  The second half follows the author’s father’s end of life experience.  The upshot is the author’s personal growth as a physician in helping patients understand the medical options available to them and navigate their own end-of-life path.  He is a huge proponent of palliative and hospice care, and has some remarkable statistics from the insurance companies which support palliative and hospice care universal availability.  He believes every physician should be better educated in explaining the benefits of these services to their patients.

Personally, I think many people don’t realize some of the hospice services are for-profit businesses.  Articles like this one from CBS Money Watch discusses the pros & cons of for-profit and non-profit services.

www.cbsnews.com/news/the-big-and-profitable-business-of-dying/

Principally, for-profits market themselves toward long-term care patients, like those with dementia, so they can bill MediCare longer.  Since their focus is money, they may provide more limited visits and actual services with staff who have less training than Non-profits, which don’t do much marketing, take all patients, and tend to provide longer visits with more qualified staff.  Actual studies have not shown significant difference between profit and non-profit hospice care, as found in this abstract from the NIH:

www.ncbi.nlm.nih.gov/pubmed/22527254

Here’s a link to the full article in Harper’s Magazine from January, 2016:

harpers.org/archive/2016/01/when-i-die/

Here is the link to excerpt in The Week:

theweek.com/articles/600582/doctor-helped-dying-end-lives-dignity-diagnosed-cancer

 

Managing Orthostatic Hypotension (article for physicians)

This post may be of interest to those who would like some ideas on dealing with orthostatic hypotension.

An article was published in late October 2015 in a managed care journal for MDs on how to treat neurogenic orthostatic hypotension that occurs in MSA, LBD, and Parkinson’s.  It’s a short article, and is available at no charge online.

www.ajmc.com/journals/supplement/2015/ACE0034_Oct15_NOH/ACE0034_Oct15_NOH_Isaacson_etal/

In particular, I like the list of non-pharmacologic physical “counter-maneuvers” that can be employed for orthostatic hypotension (OH).

Two websites are mentioned with video instructions and tutorials — www.syncopedia.org and www.stars.org.uk.

On the last page, you can find a link for the PDF of the full article.  Looking at the PDF seems to be the only way to view the tables.  There are two good tables — a list of drugs that cause OH (copied below), and details on three medications for OH (droxidopa, midodrine, and fludrocortisone).

Robin


Table 2. Drugs That Cause Orthostatic Hypotension

Alpha1-adrenergic antagonists
doxazosin, prazosin, terazosin

Antipsychotic drugs
clozapine, quetiapine, iloperiodone, chlorpromazine, thioridazine

Diuretics
furosemide, hydrochlorothiazide

Antidepressants
amitriptyline, clomipramine, imipramine, doxepin >6mg/day, trimipramine, trazodone

Calcium channel blockers
diltiazem, verapamil

Anti-Parkinson drugs
amantadine, levodopa, pramipexole, ropinirole, selegiline

Monoamine oxidase type A inhibitors
phenelzine, tranylcypromine

Nitrates
isosorbide dinitrate, nitroglycerin

 

“What you can do to keep the doctor-patient relationship healthy”

Here’s an article written by Consumer Reports, published in a recent Washington Post, about “fixing” concerns you may have with your MD.

The concerns include a failure to communicate; the MD discouraging second opinions; disorganized MD’s office; not feeling respected by the MD; and the MD holding back important info.

See:

www.washingtonpost.com/national/health-science/what-you-can-do-to-keep-the-doctor-patient-relationship-healthy/2016/01/15/d0653c26-7768-11e5-a958-d889faf561dc_story.html

Health & Science
What you can do to keep the doctor-patient relationship healthy
Washington Post
By Consumer Reports
January 18, 2016

Robin

 

Short excerpt from “Being Mortal”

Over the last six months or so, I’ve heard from many of you via email or at support group meetings about Atul Gawande’s book “Being Mortal.”  I have seen the wonderful documentary, based on the book.

Here’s an email I received yesterday from long-time local support group member Helen Medsger:

I’ve just completed “Being Mortal,” a powerful and very personal non-fiction by Atul Gawande, a general surgeon at Brigham Women’s and Children’s. He chronicles his own journey with his father, patients and friends as they face end-of-life decisions and how the process that our modern, technology-driven medical system has created should change to provide more compassionate care.  I’d recommend it for families that are in the process of making end-of-life decisions and who can truly be open to the tough questions.  A sample is below.

Robin


Excerpts from “Being Mortal” by Atul Gawande that resonated with Helen:

“We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive. Those reasons matter not just at the end of life, or when debility comes, but all along the way. Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same: What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding?

The field of palliative care emerged over recent decades to bring this kind of thinking to the care of dying patients. And the specialty is advancing, bringing the same approach to other seriously ill patients, whether dying or not. This is cause for encouragement. But it is not cause for celebration. That will be warranted only when all clinicians apply such thinking to every person they touch. No separate specialty required.

If to be human is to be limited, then the role of caring professions and institutions – from surgeons to nursing homes – ought to be aiding people in their struggle with those limits. Sometimes we can offer a cure, sometimes only a salve, sometimes not even that. But whatever we can offer, our interventions, and the risks and sacrifices they entail, are justified only if they serve the larger aims of a person’s life. When we forget that, the suffering we inflict can be barbaric. When we remember it the good we do can be breathtaking.”

 

Definition of DLB (vs. PDD, parkinsonism)

Group member Helen Medsger shared this blog post with me today.  She found it to be a well-organized definition of Dementia with Lewy Bodies.  The post, on Brain Blogger, is an explanation of the difference between Parkinson’s Disease Dementia and Dementia with Lewy Bodies, and of the difference between Parkinson’s Disease and parkinsonism.

See http://brainblogger.com/2016/01/18/dementia-with-lewy-bodies-an-underrated-disease/

Brain Blogger
Dementia With Lewy Bodies — An Underrated Disease
by Sara Adaes, PhD
January 18, 2016

Robin

“Family Caregiving Isn’t Easy: Emotional Management Tips”

This article offers emotional management tips to family caregivers. See:

www.huffingtonpost.com/steve-landers-mdmph/family-caregiving-isnt-easy-emotional-management-tips_b_8923824.html

The Blog – Huffington Post
Family Caregiving Isn’t Easy: Emotional Management Tips
by Steve Landers, MD, MPH
Co-Authored With Michael Brustein, PsyD
Posted: 01/19/2016 8:27 am EST

This article’s authors (an MD and a clinical psychologist) note that “If you’re already experiencing emotional struggles and feeling distressed, you should promptly seek help from a primary care or mental health professional.” 

On the other hand, “If things are generally going well and you want to prevent or reduce the impact of potential emotional challenges,” the authors provide some tips for coping with caregiver anxiety, guilt, grief, and anger.

I especially liked this advice:  “Mourn the person who is no more, but engage with the person who is.”

Robin

 

 

Partnering with physicians, etc. (Dr. Nancy Snyderman)

An interview with Dr. Nancy Snyderman was published in Today’s Caregiver.  (I couldn’t find a date on the interview.)  Dr. Snyderman is asked her advice for family caregivers when dealing with the healthcare system and partnering with physicians in particular.

See:

www.caregiver.com/articles/interviews/nancy_snyderman_interview.htm

This is a nice quotation of Dr. Snyderman’s:

“To me, caregiving is about quality of life as much as it is about length of life. And it is about letting the person who is being cared for have a piece of the decision-making when possible. Life with dignity and death with dignity are two things that we do not talk enough about.”

The interviewer asks Dr. Snyderman what is the one most important piece of advice you would share with a caregiver?  Her reply:

“I know that you are probably overwhelmed with all kinds of decisions. But I want you to know that as part of this process, be in the moment as much as you can. You are going to remember things that today may seem minute. But they are going to come back and be some of the greatest gifts in your life. And the other thing I would say is that you will find that as a caregiver, you take care of everyone on the planet and you are on the back burner; that is not sustainable. Taking care of yourself is not selfish. It is self-preservational. Find the time to do that. You will have more to give in the end.”

The interviewer also asks:  “What do you advise family caregivers when dealing with the healthcare system?”  Dr. Snyderman says:

“I think this is particularly true for women. The good manners that our mothers taught us that help us in social situations and open up doors and allow you to have a lovely conversation at a dinner party–those same manners do not serve you well when you are advocating for someone who needs help. I have witnessed it firsthand. I have been that pit bull. I have relied on people to be that pit bull for me. But the reality is the system is complex. It is intimidating. It is labyrinthine. And whether you are the caregiver or the person who is being cared for, it is just downright complicated.”

In the interview, Dr. Snyderman refers to a for-profit business she started, CarePlanners.com.  This company provides services to family caregivers.

Robin

 

 

 

LBD is mentioned a couple of times in this story

“The End” is a series in the New York Times about end-of-life issues.  As I was reading over the latest installment, I noted that the story is about a woman with Lewy Body Dementia.

LBD and its symptoms are only mentioned twice in the story:

“Visiting her in Florida, I noticed increasing balance problems and short-term memory lapses, early signs of Lewy body dementia.”

“For the last two years of her life, she was bedridden with advanced Lewy body dementia and a broken hip. Her eyes were closed most of the time, her body shuddering from jerky, involuntary movements. At least she wasn’t aware that her hands were sheathed in gloves to calm her, or how she was sedated to allow caretakers to bathe her and change her diapers.”

For the full article, see:

opinionator.blogs.nytimes.com/2016/01/13/my-motherless-mother/

The End
My Motherless Mother
The New York Times
By Candy Schulman
January 13, 2016 4:45 am

Robin

 

Accepting Elders’ Opinions/Wishes While Caregiving

Over the holidays, my husband and I found ourselves dealing with two elderly family members with mild cognitive impairment and dementia (maybe vascular).  So I’ve been doing some reading on related topics.

I came across this nice article today on AgingCare.com, which may be of interest to adult children who are communicating with aging parents:

www.agingcare.com/Articles/balancing-safety-with-independence-193276.htm

Learn to Back Off and Accept Risks While Caregiving
AgingCare.com
January 04, 2016

The author of the article wrote the well-titled book “Minding Our Elders.”

This sentence range true for me:  “Anxiety over our elders’ safety can turn adult children into dictators.”  There was definitely an adjustment period in helping my father cope with neurological decline.

And this sentence brought up a lot of thoughts as well:  “It may mean biting our tongues while our parents enjoy taking a few risks.”  I always found it hard to bite my tongue, though, when it came to the risk of falls.

Robin