Palliative care at any stage and earlier conversations about patients’ goals

This recent article in the New York Times by Dr. Dhruv Khullar argues in favor of (a) palliative care that is driven by patient need, not disease prognosis, and (b) earlier conversations about patients’ goals at the end of life.

Dr. Khullar makes the point that:  “Despite growing recognition that more care isn’t necessarily better care, particularly at the end of life, many Americans still receive an enormous dose of medicine in their final days.”

Some data shared in the article include:

* “On average, patients make 29 visits to the doctor’s office in their last six months.”

* “In their last month alone, half of Medicare patients go to an emergency department, one-third are admitted to an I.C.U., and one-fifth will have surgery — even though 80 percent of patients say they hope to avoid hospitalization and intensive care at the end of life.”

* “Medicare spending for patients in the last year of life is six times what it is for other patients, and accounts for a quarter of the total Medicare budget — a proportion that has remained essentially unchanged for the past three decades.”

Here are a few more excerpts:

* “Two interventions have consistently been shown to help patients live their final days in accordance with their wishes: earlier conversations about their goals and greater use of palliative care services, which emphasize symptom control and greater psychological and spiritual well-being — and which recognize that longer survival is only part of what patients want.”

* There is a push underway “to separate palliative care from end-of-life care. Many argue that palliative care…should be considered at any stage of a serious illness — not just at the end. Its use should be driven by patient need, not disease prognosis. … The vast majority of patients say they would want palliative care for themselves and their family members if understood as an ‘extra layer of support’ during serious illness.”

* “But physicians still tend to conflate palliative care with hospice care, and many don’t feel comfortable engaging in these delicate discussions.”

Here’s a link to the full article:

www.nytimes.com/2017/05/10/upshot/were-bad-at-death-first-we-need-a-good-talk.html

End-of-Life Care
We’re Bad at Death. Can We Talk?
Dhruv Khullar
May 10, 2017
The New York Times

“How to have a better death” and “A better way to care for the dying” (Economist)

There are two Interesting articles in today’s Economist magazine (economist.com) that report on the “huge gap between what people want from end-of-life care and what they are likely.”  This gap was found in a survey done by The Economist in partnership with the Kaiser Family Foundation.  For the survey, people in the US, Brazil, Italy and Japan were asked a set of questions about dying and end-of-life care.

Here’s a link to the first article, which is actually a short editorial by the magazine:

www.economist.com/news/leaders/21721371-death-inevitable-bad-death-not-how-have-better-death

End-of-life care
How to have a better death
Death is inevitable. A bad death is not
Economist, Print edition
Apr 29th 2017

It cites two statistics:

* Nearly a third of Americans who die after 65 will have spent time in an intensive-care unit in their final three months of life.

* Almost a fifth undergo surgery in their last month.

Here’s a link to the second article:

www.economist.com/news/international/21721375-how-medical-profession-starting-move-beyond-fighting-death-easing-it-better

End-of-life care
A better way to care for the dying
How the medical profession is starting to move beyond fighting death to easing it
Economist International Edition
Apr 29th 2017

The second article, titled “A better way to care for the dying,” addresses what Atul Gawande, MD, calls “the experiment of making mortality a medical experience.”  It cites a few statistics:

* People in rich countries can spend eight to ten years seriously ill at the end of life.

* Many deaths are preceded by a surge of treatment, often pointless.  Nearly a third of elderly Americans undergo surgery during their final year; 8% do so in their last week.

* By 2020, 40% of Americans are expected to die alone in nursing homes.

* One international review of prognoses of patients who die within two months suggests that seriously ill people live on average little more than half as long as their doctors suggested they would. Another study found that, for patients who died within four weeks of receiving a prognosis, doctors had predicted the date to within a week in just a quarter of cases. Mostly, they had erred on the side of optimism.

* Remarkably, in three trials the patients receiving palliative care lived longer, even though the quantity of conventional treatment they opted to receive was lower.

* In one study just 43% of people who had written living wills wanted the same treatment course two years later.

Both articles are worth reading.

Serious Illness Conversation Guide and Family Communication Guide

There are two Interesting articles in today’s Economist magazine about dying and having a good death.  (I will post separately about those articles.)  The articles mention this resource:

Serious Illness Conversation Guide
by Ariadne Labs (founded by Atul Gawande, MD)

The Guide is a one-page checklist for clinicians to find out what a terminally ill patient understands about his/her condition and prognosis.  It’s also a way for the clinician to learn what the patient’s goals are.  You can find the one-page guide for clinicians here:

www.ariadnelabs.org/wp-content/uploads/sites/2/2015/08/Serious-Illness-Conversation-Guide-5.22.15.pdf

The Guide for physicians refers to the “Family Communication Guide.”  You can find this short guide here:

www.talkaboutwhatmatters.org/documents/Providers/SI-Family-Communication-Guide.pdf

This might be a useful resource to generate family discussion when someone has a neurological diagnosis.  “This booklet can help you talk with your loved ones about your illness and the future,” according to the guide.

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:

washingtonpost.com/national/health-science/how-i-discovered-an-important-question-a-doctor-should-ask-a-patient/2015/03/09/ca350634-bb9c-11e4-bdfa-b8e8f594e6ee_story.html

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

Robin

 

“Why we Need to Stop Saying, “I’m Sorry For Your Loss” (Elephant Journal)

Here is one author’s point of view that we should stop saying “I’m sorry for your loss” when meeting a bereaved person.  The author offers five options:

1. I’m sorry you’re suffering right now, but I’m here with you and willing to help any way I can. Is there anything you need right now?

2. I’m sorry for whatever challenges might lie ahead for you, but I’m here and willing to help. Would it be okay if I call next week just to check in with you?

3. Please accept my deepest condolences. I can’t imagine what you must be going through right now, but I know enough about grief to know that it can be very challenging. Don’t hesitate to call me if there’s anything I can do to help.

4. I’m so sorry to hear about _____. I’m sure you’re going to miss him/her terribly. How are you holding up?

5. I know there’s nothing I can say right now to make things better, but I also know that having someone to talk to at times like this is really important, so don’t hesitate to call me whenever you need to.

Here’s a link to the full article:

elephantjournal.com/2017/04/why-we-need-to-stop-saying-im-sorry-for-your-loss/

Why we Need to Stop Saying, “I’m Sorry For Your Loss.”
by Ed Preston
Elephant Journal
Apr 2, 2017

Food for thought,
Robin