POLST – Genl Info and 1/11/12 Lecture

Some of you have seen the bright pink POLST form.  POLST stands for Physician Orders for Life-Sustaining Treatment.  The form is to be filled out by someone with a life-threatening illness and signed by his/her physician.  It’s ideal if the physician and patient discuss the options raised in the form.

CA POLST

You can get general info on the California version of this form and download a copy at this website:

http://www.capolst.org/

It’s available in many languages.  The form was recently revised. The latest version is dated 4/1/11.  All California care facilities have required this form for many years.

I plan to bring some to the next caregivers support group meeting on 12/4.

ADVANCE CARE PLANNING

You can find some useful information on talking about advance care planning for the Coalition for Compassionate Care of California website:

http://www.coalitionccc.org/advance-health-planning.php

On that page are many additional resources. I would like to highlight two of those:

* Five Wishes, fivewishes.org.  Many in our support group recommend using this advance care directive form.  My husband and I have purchased copies of this form for our family members, and discussed it with them.

* “Go Wish” cards.  I bought a couple of sets a year ago and have used them for advance care planning discussions with family members.  Let me know if you’d like to borrow a set prior to the next group meeting; I can bring a set with me if I have some advance warning!

POLST THEORY

The POLST form was developed at the Oregon Health & Science University. You can read about the POLST “paradigm” here along with a map of what states have POLST programs:

http://www.ohsu.edu/polst/

LECTURE NEXT YEAR

At the Palo Alto Parkinson’s Support Group meeting on January 11, 2012 (next year), a geriatrician at the Palo Alto Medical Clinic will be speaking about the theory behind the POLST.  An RN will be discussing how to fill out the form.  This meeting is held at Avenidas, the senior center in downtown Palo Alto, from 2 to 3:30pm.  No RSVP is required.  Anyone is welcome to attend.

Helping protect your aging parent from financial pitfalls

Local support group member Ellen shared this Morningstar article with me at Sunday’s caregiver support group meeting.  The article doesn’t contain investment advice, but rather contains info on “key actions to consider that can help protect you or an aging parent from the financial pitfalls associated with cognitive decline.”

The sections on “Documenting Decline” and “A Sensitive — and Critical — Issue” discuss the issue of cognitive decline and poor financial decision-making.

After digging around, I found parts of the article on two different websites:

cawidgets.morningstar.ca/ArticleTemplate/ArticleGL.aspx?id=387767

louroy.blogspot.com/2011/07/eight-steps-to-wealth-protection-for.html

The Smart Investor
Eight steps to wealth protection for aging investors
By Mark Miller
07-21-11

Happy reading,
Robin

 

“Support groups a lifesaver for caregivers”

This is a good article from the Herald-Tribune (heraldtribune.com) about support groups being a “lifesaver” for caregivers.  Brain Support Network coordinates a caregiver-only support group in the San Francisco Bay Area for Lewy Body Dementia, Progressive Supranuclear Palsy, Multiple System Atrophy, and Corticobasal Degeneration.  Here’s the Herald-Tribune article as to why you should join!

Robin

———————-

www.heraldtribune.com/news/20110712/support-groups-a-lifesaver-for-caregivers

Support groups a lifesaver for caregivers
by Paula Falk, correspondent
Herald-Tribune
Posted Tuesday, Jul 12, 2011 at 12:01 AM

In the sometimes crazy, often exhausting and overwhelming world of caregiving, finding a safe place to share, occasionally vent and figure out what to do next isn’t always easy.
A support group can help hold life together when everything around you seems to be unraveling.

Without support, the impact of caregiving on one’s health can be devastating. It has been estimated that more than 60 percent of caregivers predecease their loved ones. As one long-term attendee of our support group at Senior Friendship Centers observed:

“Do you notice that individuals in our group are still here? I think one of the reasons is because we come to this support group. The support we receive here, the strategies we learn, the strength we gain to move forward and make decisions, all have an impact on our health and well being.”

What to expect: There are two rules in most support groups: personal information is confidential and one person talks at a time. People are given a chance to talk about their situation, and are never pressured to share anything if they feel uncomfortable doing so. Typically, new people tell something about themselves and their caregiving situation, and members of the group ask questions about the challenges they’re facing, what they need and what they are doing to get through it.

You’re not alone: You learn that you’re not the only one having trouble coping. Other members of the group listen and offer solutions. You are encouraged to take bits and pieces from the “experts” around the room who have been through many of the same experiences you’re facing, and to use what works for you. No one judges. When somebody is telling their story for the first time, you will see others nodding to indicate they have had a similar experience.

Your feelings count: “When people say “how are you?” they genuinely want to know how you are, instead of focusing only on your loved one,” as one participant said. All too often it can be easy for the caregiver’s needs and identity to get lost in the process of caring for another.

Taking action: As trust grows, people in the group become accountable to each other and often encourage one another to move forward to find solutions. Together, they help identify options, provide support, build confidence to make decisions, and take action.

For example, one couple attending a group hadn’t had a vacation or time to themselves for over a year. Their mother was in a facility being cared for, but they couldn’t imagine going away for even a day, let alone taking a trip, because they felt they needed to be there for her all the time. The group pointed out that she was well cared for, and it was OK to give themselves permission to care for themselves. It was a tremendous relief to them.

Healthy choices: Sometimes communication can be especially tough for men and for people who internalize stress. Finding a safe place to share feelings is important. We’re finding that more and more men are reaching out and joining support groups to ease the emotional and physical toll caregiving can take on their lives.

Note: Support groups specific to the disease your loved one has been diagnosed with are especially beneficial. There are support groups for Alzheimer’s, cancer, Parkinson’s, stroke and other diseases. Information is available through local organizations serving these diseases as well as through Senior Friendship Centers Caregiver Resource Center.

Paula Falk, the director of the Caregiver Resource Center (CRC) and Adult Day Service Program at The Living Room at Senior Friendship Centers’ Sarasota campus, writes a monthly column for Health + Fitness. The Caregiver Resource Center is a community collaboration bringing together agencies and businesses offering services and products to help caregivers. For more information, call 556-3270, email [email protected], or visit www.friendshipcenters.org.

6 Things Never to Say to a Sick Friend + 4 Things…

I ran across this article tonight, and it certainly resonated. Many people with neurodegenerative disorders report that they dislike being told “you look great,” particularly when most of the symptoms are non-motor ones. The article’s author, who dealt with bone cancer, details 6 things you should never say to a friend or relative who’s sick and 4 things you can always say…

http://www.nytimes.com/2011/06/12/fashi … -life.html
(access to the NYT is no longer free beyond a certain number of articles each month)

(Excerpts from)

June 10, 2011
New York Times

This Life
‘You Look Great’ and Other Lies
By Bruce Feiler

…So at the risk of offending some well-meaning people, here are Six Things You Should Never Say to a Friend (or Relative or Colleague) Who’s Sick. And Four Things You Can Always Say.

First, the Nevers.

1. WHAT CAN I DO TO HELP?

2. MY THOUGHTS AND PRAYERS ARE WITH YOU.

3. DID YOU TRY THAT MANGO COLONIC I RECOMMENDED?

4. EVERYTHING WILL BE O.K.

5. HOW ARE WE TODAY?

6. YOU LOOK GREAT.

So what do patients like to hear? Here are four suggestions.

1. DON’T WRITE ME BACK.

2. I SHOULD BE GOING NOW.

3. WOULD YOU LIKE SOME GOSSIP?

4. I LOVE YOU.

Bruce Feiler’s memoir, “The Council of Dads: A Story of Family, Friendship and Learning How to Live,” has just been published in paperback.

Study into use of feeding tubes – surveying families

Though the two studies mentioned in this post refer to feeding tubes in those with dementia, many issues raised in this email are relevant to those without dementia as well.

Dr. Joan Teno, a community health physician and researcher at Brown University and Dr. Susan Mitchell, of the Hebrew Senior Life Institute for Aging Research, have researched feeding tube decisions over the last several years. Previously they found that “some American hospitals inserted no feeding tubes ­ zero ­ in patients with advanced dementia over an eight-year period while others [inserted feeding tubes in] one in three.” In their 2010 study, they concluded: “Among nursing home residents with advanced cognitive impairment admitted to acute care hospitals, for-profit ownership, larger hospital size, and greater ICU use was associated with increased rates of feeding tube insertion, even after adjusting for patient-level characteristics.”

Wanting to explore the discrepancy in feeding tube placements, these two researchers and a team surveyed family member, after their relatives’ deaths, on decisions they had made regarding feeding tubes. All of the deceased relatives had dementia. The researchers talked to nearly 500 people from five states — MA and MN, where there are low rates of feeding tube use, and AL, FL, and TX, where there are high rates of feeding tube use.

About 10% of the deceased relatives received a feeding tube. The New York Times reports that:

* “Of patients who received feeding tubes, 13.7 percent of family members reported that doctors had inserted the tubes without seeking permission at all.”

* “But even when medical providers raised the issue and a feeding tube was inserted, 12.6 percent of the family respondents said they had felt pressured by the physician to agree to the procedure, and more than half believed that the physician strongly had favored tube insertion.”

* “Moreover, these talks tended to be cursory: More than 40 percent of respondents said the discussion had lasted less than 15 minutes, and roughly a third said no one had mentioned the risks involved.”

* “In the end, about a third of these families said they thought the feeding tube did improve their loved ones’ quality of life, while only 23.4 percent said they regretted the use of the tube.”

Dr. Teno addresses why there’s a push for feeding tubes: “My guess is, we’ve changed hospital medicine to focus on discharge. How do we move someone quickly out of the system? You put the feeding tube in, you send people back to the nursing home.”

Dr. Paula Span, who wrote the New York Times article on the study, believes that the push for feeding tubes results from doctors not wanting to talk about death with their patients.

Here’s a link to the NYT article (with some interesting reader comments posted):
http://newoldage.blogs.nytimes.com/2011 … -in-haste/

And I’ve copied the abstract of the recent article authored by Teno, Mitchell, et al, below as well as their 2010 article on the differences in hospitals’ rates of feeding tube placement.

Robin

Decision-Making and Outcomes of Feeding Tube Insertion: A Five-State Study

Joan M. Teno MD, MS, Susan L. Mitchell MD, MPH, Sylvia K. Kuo PhD, Pedro L. Gozalo PhD, Ramona L. Rhodes MD, MPH, Julie C. Lima PhD, MPH, Vincent Mor PhD

Journal of the American Geriatrics Society, 59. Article first published online: 3 MAY 2011

OBJECTIVES: To examine family member’s perceptions of decision-making and outcomes of feeding tubes.

DESIGN: Mortality follow-back survey. Sample weights were used to account for oversampling and survey design. A multivariate model examined the association between feeding tube use and overall quality of care rating regarding the last week of life.

SETTING: Nursing homes, hospitals, and assisted living facilities.

PARTICIPANTS: Respondents whose relative had died from dementia in five states with varying feeding tube use.

MEASUREMENTS: Respondents were asked about discussions, decision-making, and outcomes related to their loved ones’ feeding problems.

RESULTS: Of 486 family members surveyed, representing 9,652 relatives dying from dementia, 10.8% reported that the decedent had a feeding tube, 17.6% made a decision not to use a feeding tube, and 71.6% reported that there was no decision about feeding tubes. Of respondents for decedents with a feeding tube, 13.7% stated that there was no discussion about feeding tube insertion, and 41.6% reported a discussion that was shorter than 15 minutes. The risks associated with feeding tube insertion were not discussed in one-third of the cases, 51.8% felt that the healthcare provider was strongly in favor of feeding tube insertion, and 12.6% felt pressured by the physician to insert a feeding tube. The decedent was often physically (25.9%) or pharmacologically restrained (29.2%). Respondents whose loved ones died with a feeding tube were less likely to report excellent end-of-life care (adjusted odds ratio=0.42, 95% confidence interval=0.18–0.97) than those who were not.

CONCLUSION: Based on the perceptions of bereaved family members, important opportunities exist to improve decision-making in feeding tube insertion.

PubMed ID#: 21539524 (see pubmed.gov for this abstract only)

Hospital Characteristics Associated With Feeding Tube Placement in Nursing Home Residents With Advanced Cognitive Impairment

Joan M. Teno, MD, MS; Susan L. Mitchell, MD, MPH; Pedro L. Gozalo, PhD; David Dosa, MD, MPH; Amy Hsu, BA; Orna Intrator, PhD; Vincent Mor, PhD
Author Affiliations: Center for Gerontology and Health Care Research, Warren Alpert School of Medicine, Brown University, Providence, Rhode Island (Drs Teno, Gozalo, Dosa, Intrator, and Mor and Ms Hsu); Institute for Aging Research, Hebrew Senior Life, Harvard Medical School, Boston, Massachusetts (Dr Mitchell); and Providence Veterans Affairs Medical Center, Providence, Rhode Island (Drs Dosa and Intrator).

JAMA (Journal of the American Medical Association). 2010;303(6):544-550.

ABSTRACT
Context
Tube-feeding is of questionable benefit for nursing home residents with advanced dementia. Approximately two-thirds of US nursing home residents who are tube fed had their feeding tube inserted during an acute care hospitalization.

Objective
To identify US hospital characteristics associated with higher rates of feeding tube insertion in nursing home residents with advanced cognitive impairment.

Design, Setting, and Patients
The sample included nursing home residents aged 66 years or older with advanced cognitive impairment admitted to acute care hospitals between 2000 and 2007. Rate of feeding tube placement was based on a 20% sample of all Medicare Claims files and was assessed in hospitals with at least 30 such admissions during the 8-year period. A multivariable model with the unit of the analysis being the hospital admission identified hospital-level factors independently associated with feeding tube insertion rates, including bed size, ownership, urban location, and medical school affiliation. Measures of each hospital’s care practices for all patients with serious chronic illnesses were evaluated, including intensive care unit (ICU) use in the last 6 months of life, the use of hospice services, and the ratio of specialist to primary care physicians. Patient-level characteristics were also considered.

Main Outcome Measure
Endoscopic or surgical insertion of a gastrostomy tube during a hospitalization.

Results
In 2797 acute care hospitals with 280 869 admissions among 163 022 nursing home residents with advanced cognitive impairment, the rate of feeding tube insertion varied from 0 to 38.9 per 100 hospitalizations (mean [SD], 6.5 [5.3]; median [interquartile range], 5.3 [2.6-9.3]). The mean rate of feeding tube insertions per 100 admissions was 7.9 in 2000, decreasing to 6.2 in 2007. Higher insertion rates were associated with the following hospital features: for-profit ownership vs government owned (8.5 vs 5.5 insertions per 100 hospitalizations; adjusted odds ratio [AOR], 1.33; 95% confidence interval [CI], 1.21-1.46), larger size (>310 beds vs <101 beds: 8.0 vs 4.3 insertions per 100 hospitalizations; AOR, 1.48; 95% CI, 1.35-1.63), and greater ICU use in the last 6 months of life (highest vs lowest decile: 10.1 vs 2.9 insertions per 100 hospitalizations; AOR, 2.60; 95% CI, 2.20-3.06). These differences persisted after controlling for patient characteristics. Specialist to primary care ratio and hospice use were weakly or not associated with feeding tube placement.

Conclusion
Among nursing home residents with advanced cognitive impairment admitted to acute care hospitals, for-profit ownership, larger hospital size, and greater ICU use was associated with increased rates of feeding tube insertion, even after adjusting for patient-level characteristics.

PubMed ID#: 20145231 (see pubmed.gov for this abstract as well as a link to the full article at no charge)