Category Archives: End of Life

Big changes needed so we can spend our final months at home

Date
Posted by
Big changes needed so we can spend our final months at home

Though this article is focused on big changes that are needed to “make care at home possible during the last six months of life,” I thought it offered some good questions to consider, such as the tradeoffs between safety and independence.

According to this Kaiser Health News (khn.org) article, experts say these big changes are needed:

1- Reallocating resources to the home setting such as with house-call programs.

2- Clarifying priorities and discussing tradeoffs such as safety vs. independence.  “If staying at home at the end of life is a priority, this has to be communicated – clearly and frequently — to your family, caregivers, and physicians, said Dr. Thomas Lee, co-author of the New England Journal of Medicine study and chief medical officer at Press Ganey, a firm that tracks patients’ experiences with care.”

3- Taking advantage of services designed for people who need help at home, such as palliative care.  Check out the website getpalliativecare.org to find programs in your area.

4- Getting needed help.

5- Building community.  Consider enrolling in a “village” program.

Here’s a link to the full article:

khn.org/news/how-to-spend-your-final-months-at-home-sweet-home/

How To Spend Your Final Months At Home, Sweet Home
By Judith Graham
Kaiser Health News
November 10, 2016   

Robin

It can take two to three years to recover from bereavement

Date
Posted by
It can take two to three years to recover from bereavement

Though this article focuses on losing a spouse, I think the information applies to adult children losing a parent as well.  Bottom line from the research being reported on in this article is that it can take two or three years to recover from bereavement.  In our local support group, this is what we’ve generally seen as well.

This recent New York Times article addresses new research that calls into question the notion that “after a brief period of sometimes intense bereavement, the vast majority of surviving spouses adjust well, returning to their previous work, daily routines and prior state of contentment within a few months to a year – a psychological outcome referred to as resilience.”

The new research suggests:  “Scratch the surface and you’re likely to find that the surviving spouse who seems happy and well adjusted may have considerable difficulties that are not apparent to a casual observer. … [It] can take two to three years or even longer for some to recover from bereavement [and return] to their pre-loss levels of functioning.”

Two Arizona-based psychologists used data gathered over 13 years in Australia.  During the 13-year study, 421 participants lost a spouse.  As the article notes, “Of the entire group, only 8 percent of the bereaved individuals were in good shape for all five indicators of resilience studied, while 20 percent were not resilient in any of them.”

The psychologists “described three factors that influenced overall resilience:

1) Reliable comfort – having someone to confide in or lean on in times of trouble, and being able to get help from other people when needed;

2) Social connectedness – whether their physical health or emotional problems interfered with social activities like visiting friends and relatives and interacting socially with neighbors or groups, and

3) Daily functioning – having difficulties with their normal activities because of emotional problems like depression or anxiety.”

The researcher found that what helped the bereaved spouses the most “was remaining socially connected and engaged in the usual activities of everyday life and knowing where they could turn for help and comfort and receiving support when they needed it.”

Here’s a link to the NYT article:

www.nytimes.com/2016/09/27/well/family/when-a-spouse-dies-resilience-can-be-uneven.html

Personal Health
When a Spouse Dies, Resilience Can Be Uneven
New York Times
By Jane E. Brody
Sept. 26, 2016

Robin

“Making a living will is a good idea. Telling people about it is even better”

Date
Posted by
“Making a living will is a good idea. Telling people about it is even better”

“Endnotes” is a regular section of STAT, a website focused on the “frontiers of health and medicine.”  Someone on an online frontotemporal dementia support group recently shared an article on STATnews.com so I started digging around on the website.  There are lots of good articles.

This article — titled “Making a living will is a good idea. Telling people about it is even better” — makes an excellent point.  Many of us have prepared a living will or advance care directives but few of us have shared them with our primary and secondary healthcare agents.  And few of us have had conversations about our wishes with our healthcare agents.

The author notes that “spouses often grant power of attorney to one another or complete living wills, but they find it too painful to talk openly about each other’s death.”

Also, some patients are “reluctant to thoroughly advocate for their end-of-life preferences” as they are worried about hurting the feelings of their loved ones.

When a healthcare agent doesn’t know the person’s end-of-life wishes for treatment, this can backfire because usually uninformed healthcare agents opt for aggressive treatment.

Here’s a link to the article:

www.statnews.com/2015/12/04/living-will-important-steps/

Endnotes
Making a living will is a good idea. Telling people about it is even better    
STAT
By Bob Tedeschi
December 4, 2015

Robin

 

“What It Feels Like to Die”

Date
Posted by
“What It Feels Like to Die”

This is an interesting article on what likely happens as people are “actively dying.”  Despite the sub-title, I didn’t think there was a lot of science being reported but it’s worthwhile reading nonetheless.

www.theatlantic.com/health/archive/2016/09/what-it-feels-like-to-die/499319/

What It Feels Like to Die
Science is just beginning to understand the experience of life’s end.
The Atlantic
Jennie Dear
Sep 9, 2016

Robin

Article on woman with ALS using California’s End of Life Options Act

Date
Posted by
Article on woman with ALS using California’s End of Life Options Act

Since the time the California legislature discussed the End of Life Options Act in 2015, the topic of planning end of life via medication occasionally comes up at local caregiver support group meetings.  The new law went into effect in early June 2016.

One big change is that many hospice agencies now support the End of Life Options Act and their physicians will work within the law’s requirements.

When end of life is planned, the person dying often requests that friends and family gather beforehand.  There was an interesting article published recently on Vox about a California woman with ALS who planned her death and had a “party” prior to that.

Here’s a link to the article:

www.vox.com/2016/8/22/12552940/assisted-suicide-california

I arrived at my friend’s party. A few hours later she died, exactly as planned.
Updated by Kestrin Pantera
Vox
Aug 22, 2016, 8:10a

Robin