POLST, DNR, Advance Health Care Directive, etc.

A few of us braved the rain Sunday night to attend the support group meeting.  I thought I would pass on one of the short discussions some of us had, and give you some related links to forms and info available online.

Cheri said that several people told her she could get a DNR (do not resuscitate) form from her doctor.  Well, she asked two doctors and neither had such a form.  She said that she had been advised to get such a form for her husband and sign it because if you don’t have such a form emergency medical personnel can go down a path the patient and family don’t want to go down.  However, Cheri pointed out that even if you have a signed DNR, the healthcare POA (power of attorney) can always say “we want resuscitation efforts to be made.”  Having a signed DNR gives the healthcare POA some flexibility.  Not having a signed DNR puts all the responsibility on the POA and gives him/her no flexibility. (I hope I’ve adequately described the point.)

Ted and I talked about our preference for the POLST form to a simple DNR form.  POLST stands for Physician Orders for Life-Sustaining Treatment.  It is signed by an MD, and serves as an MD’s instructions for what sorts of treatment anyone has determined he/she wants to have.  Paramedics, RNs, and MDs will accept and take instructions from the POLST.*  The POLST goes through a few more scenarios than just the person-is-not-breathing-and-has-no-pulse scenario.  For example, it asks what level of treatment should a person have — full treatment, limited treatment, or comfort measures only.  It asks if antibiotics are to be included in comfort measures.  It asks if intubation is to be included with full treatment.  It does NOT have as many scenarios, however, as “Five Wishes.”  And, in contrast with “Five Wishes,” the POLST is signed by an MD so these are “doctors’ orders.”

You can find general info on POLST at polst.org; this is a national effort that started at Oregon Health & Science University.  The POLST has recently become usable in California. State-licensed facilities are now being required to have a POLST form on all residents.  [Editor’s note:  you can now find California’s form at capolst.org.]

The POLST is a great form of anyone with a neurodegenerative condition or terminal illness to have completed and signed by his/her MD.

For the non-neurodegenerated, there’s the Advance Health Care Directive.  In our state, the California Medical Association has an Advance Health Care Directive Kit.  The cost is $5.  I have a few more free copies left; let me know at the next support group meeting if you want to get a copy from me.

This question-and-answer from the California Medical Association website may be of interest:

#18 Q:  I have reached a point in my life that I don’t want the paramedics to give me CPR. Will this Advance Health Care Directive keep this from happening?

#18 A:  If the paramedics are made aware of your Advance Health Care Directive before they start resuscitative efforts, and the Advance Health Care Directive clearly instructs them not to start these efforts, your wishes should be respected. You may also want to complete the “Prehospital Do Not Resuscitate (DNR)” form and obtain a “Do Not Resuscitate– EMS” medallion approved by California’s Emergency Medical Services Authority. You may order copies of the DNR form (which includes instructions on ordering the medallion) from CMA publications.

If someone signs a DNR form, it means that they do not want CPR used.  The DNR form for use in California can be ordered from the California Medical Association.  The cost is $2.  The CMA has a two-page brochure on the effectiveness and risks of CPR.

As for the Five Wishes document….  As far back as 2005, one of our founding group members, Storme, discusses it at most support group meetings she attends.  She has completed the form herself, and worked with her mother to complete the form.  Hearing Storme, many other group members have completed the form, including me. More recently, I heard Dr. Melanie Brandabur, a neurologist at The Parkinson’s Institute in Sunnyvale, recommend it.

Five Wishes is useful to fill out, and review with your healthcare POA.  This presents many scenarios, describing in detail things you may and may not want.  It addresses your medical, personal, emotional and spiritual wishes.  It is an invaluable resource for your healthcare POA, if you are unable to communicate your wishes.  The cost is $5.

Beneath my name, I’ve provided all the links you’ll need.  Here’s where you can get general info, find the POLST form for CA, learn about Five Wishes, order the CMA AHCD Kit, order the DNR form, and all the stuff described above.

Happy planning!
Robin

* Paramedics and RNs cannot take instructions based on a Living Will and they may not take instructions from any other Advance Directive you may have.  In the absence of a DNR or POLST, paramedics may be required to perform CPR if they have no MD’s orders to the contrary.

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POLST:
polst.org

Patients and Families FAQ on POLST:
www.ohsu.edu/ethics/polst/patients-families/faqs.htm

POLST form for CA:
[Editor’s note:  the form is now at capolst.org]

Five Wishes from Aging with Dignity:  (cost is $5)
www.fivewishes.org/

Info on the CMA Advance Health Care Directive Kit:
www.cmanet.org/publicdoc.cfm?docid=7&parentid=4

View a “Sample” Copy of the CMA AHCD Kit:  (unfortunately you can’t print a usable copy)
www.cmanet.org/upload/AdvDir2003Finalwatermarked.pdf

Order the CMA AHCD Kit:  (cost is $5)
www.cmanet.org/bookstore/product.cfm?catid=12&productid=154

Order the Pre-Hospital Do Not Resuscitate (DNR) form:  (cost is $2)
www.cmanet.org/bookstore/product.cfm?catid=12&productid=59

View the CMA’s brochure on CPR:
www.cmanet.org/upload/cma_cpr_brochure.pdf

Family Caregiver Alliance Fact Sheet on end-of-life decision making:
www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=401

How MDs complete death certificates and “old age” not a cause of death

Given our efforts with brain donation, we are often asked by families how they can get a certain “cause of death” listed on the death certificate (DC) and what that means.

Since a brain autopsy or body autopsy cannot be done in time for the death certificate, what is placed on the DC is largely up to the hospice MD, MD in the hospital, MD who most recently treated the patient, or coroner.  Of course families often can influence this.  And, once a brain autopsy report has been received, families can petition to have the DC modified to reflect the confirmed neurological diagnosis.  (There can be a fee associated with this.)

The topic of “cause of death” is raised in a recent blog post in the New York Times.  The author is frustrated that “old age” cannot be listed as a cause of death on a DC.  The author states:

Instead, every death must be attributed to a single disease, which is the immediate cause of death. A second disease may be cited as the intermediate cause, and a third as the underlying condition. Even in situations “when a number of conditions or multiple organ/system failure resulted in death,” the C.D.C. instructs that “the physician, medical examiner or coroner should choose…a clear and distinct etiological sequence,” a “chain of morbid events.”

The author believes that this “biomedical world view” distorts the reality that people do die of old age!

Here’s a link to the article:

newoldage.blogs.nytimes.com/2008/10/23/the-immediate-cause-of-death/

The Immediate Cause of Death
New York Times
By Jane Gross
October 23, 2008 6:12 am

Robin

“A Short Stay in Switzerland” movie about death with dignity (and PSP) – coming soon

This is an excerpt from an article in a London newspaper about a BBC movie that begins filming soon.  It is called “A Short Stay in Switzerland.”  The movie is about Dr. Anne Turner who went to Switzerland to die with dignity.  Dr. Turner had progressive supranuclear palsy.  Her husband died with multiple system atrophy.  Actress Julie Walters plays Dr. Turner.

Robin

——————-

www.dailymail.co.uk/tvshowbiz/article-1036129/BAZ-BAMIGBOYE-Ralph-Fiennes-Nicole-Kidman-Julie-Walters–more.html

Julie honours a woman who died with dignity
Daily Mail (London), July 19, 2008

Julie Walters, in the groove with hit film musical Mamma Mia!, is taking on a real-life role that will be the subject of passionate debate.

Walters will portray Dr Anne Turner, the former medical practitioner from Bath who hit the headlines in early 2006 when she gave notice of her intention to end her life by means of an assisted suicide.

Rehearsals begin next month in London on the BBC1 TV film called A Short Stay In Switzerland, a factually-inspired drama written by playwright Frank McGuinness.

Simon Curtis, the director, said McGuinness’s screenplay sensitively explores the final 18 months of Dr Turner’s life until she and her three children travel to a clinic in Zurich where arrangements had been made for her to die with dignity, which she argued ‘should be everybody’s right’.

It’s a highly emotive topic but, Curtis noted, the combination of McGuinness’s script and Julie Walters’s acting should be able to make it palatable for TV audiences.

Dr Turner died on January 26, 2006, a day before her 67th birthday.  She had been diagnosed with Progressive Supranuclear Palsy (PSP), a neurological degenerative disease.

Her husband had died in 2002 of Multiple System Atrophy (MSA). Sufferers lose their sense of balance and are unable to talk, swallow or blink.

Curtis, who directed the acclaimed Cranford serial with Judi Dench and Eileen Atkins, will meet Dr Turner’s family next week.

Her son and daughters have already collaborated with McGuinness and producers Liz Trubridge and Ruth Caleb on the screenplay.

‘The family has been very supportive, which is important in a drama of this nature,’ Curtis observed.

‘They’re a loving family and in difficult times you find glimpses of warmth, happiness, love and humour.’

He added that Walters has what he called ‘that extra ingredient the public responds to; Dame Judi has that, too.

‘The audience love to go on the journey she takes them on’.

A Short Stay In Switzerland will shoot in London for four weeks, with a brief location in Zurich.

 

Do people near the end “starve to death” or “die of thirst”?

This is an excerpt of a post recently published on the Society for PSP’s Forum, an online discussion group.  The author is my online friend Ed Plowman.  Though he writes about his wife Rose with progressive supranuclear palsy, his comments apply to those nearing the end with any disorder.  Ed addresses whether those nearing the end suffer from starvation or thirst.

Robin

—————-

Excerpt of a post by Ed Plowman
Society for PSP Forum
Mon May 05, 2008 11:05 pm

Two hospice doctors and a hospice nurse explained to me what the final days for Rose will be like if she no longer can swallow or take fluid, and remains adamant about no feeding tube or IV hydration. Morphine likely will be administered. (I was with a dying friend recently who was on morphine; he seemed completely normal, not in a “drugged stupor” — a common misconception about the effects of morphine, as I understand it — and we conversed normally for hours with each other and members of his family. He knew the end was near, he seemed relaxed and calm.)

My youngest daughter said she could not stand by while her mother starves to death or dies of thirst. The hospice docs explained that with morphine, that doesn’t happen. The patient has no desire to eat, and often has no sensation of thirst. Moistening the lips and mouth will alleviate discomfort from “dryness.” After the patient stops eating, the body normally will begin the shutdown process; it will produce and release from the pituitary gland endorphins, or endomorphines — a natural form of morphine. These biochemicals give the patient a calming sense of wellbeing. Eventually, in many cases, when the respiratory system begins to shut down, the patient falls asleep, breathing becomes shallow, and the end is peaceful. (That’s how it was with the dying friend I mentioned above.)

The end script is not exactly the same for everyone, of course. But the hospice staff said they’ve not seen any of their patients, many of whom could not eat or drink at the end, die of hunger or thirst as many people commonly envision.

I think it’s important that the family gather together in harmony, compassion, and loving appreciation as the end nears. It wouldn’t hurt to recount a few unforgettable positive memories involving the loved one. Some families sing favorite hymns; someone may feel led to say a prayer of thankfulness for what the loved one has meant in the lives of family members. The loved one with PSP may not be able to speak or even move. But he or she will hear and understand all that is said and done. This can be a precious, joyful time for him or her.

I believe we are fast approaching this time of transition at our house.

ed p.

“For many, ‘Do Not Resuscitate’ too painful to discuss

This article is on DNR orders; it’s from this Monday’s Boston Globe. Everyone should discuss these orders with family members!

We were very lucky in this regard. I signed the paperwork to place Dad on DNR on a Tuesday, using his Living Will and POLST as legal and moral support for the decision. He died that Friday, peacefully.

http://www.boston.com/news/local/articl … o_discuss/

For many, ‘Do Not Resuscitate’ too painful to discuss
Relatives, doctors often delay in offering patients the option

By Patricia Wen, Globe Staff
The Boston Globe
December 3, 2007

CHELMSFORD – The gray official form, labeled “Do Not Resuscitate,” lay for months at the bottom of Linda Batson’s dresser drawer. She had wanted her ailing 85-year-old mother to sign it.

Last Christmas, Batson’s mother, suffering from a terminal liver disease, had nearly collapsed inside St. Mary’s Church. She had later told her only daughter that she was ready, if her heart stopped, to “join Dad.” Batson knew that a DNR order would make clear to medical workers her mother’s desire to forgo emergency measures, and relieve her of the burden of communicating those final wishes.

Batson had trouble raising the subject to her mother, however. At Batson’s request, her mother’s longtime doctor had discussed the DNR form during an office visit in June, then handed them the gray document saying, “Go home and think about it.” But, as the two watched soap operas and took strolls in the following weeks, Batson put off the talk. Her mother grew weaker.

One evening this fall, she turned to her daughter.

“Linda’s going to make supper,” she said matter-of-factly from her living room chair.

“I’m Linda!” Batson replied.

“No,” her mother said. “You’re my mother.”

For families facing the impending death of a loved one, few topics trigger more anguish than the Do Not Resuscitate order. The subject can be so painful that relatives and doctors wait too long, until the patient’s mental capacity wanes and the tough decision is left to family members. There is little ambiguity in a DNR order: Emergency medical staff must withhold CPR and other life-reviving treatments if the patient’s heart or breathing stops, allowing death.

“This is the part of medicine where there’s finality,” said Dr. Wayne Saltsman, the Lahey Clinic geriatrician for Batson’s mother, Lee Russell, and her late husband. “That’s why these discussions are so hard to have. We’re talking about the end.”

The reluctance among doctors and family members to initiate these talks runs so deep that, three decades after DNR orders were introduced, their use remains spotty. Now the Department of Public Health is exploring whether to adopt a new kind of form, used in six other states, that could make the process easier. Called POLST (Physician Orders for Life-Sustaining Treatment), the document asks for a patient’s preferences on CPR, but also allows patients to make decisions about use of other life-sustaining interventions, such as intravenous fluids, antibiotics, and breathing machines.

The order would have to be signed by a doctor or nurse practitioner, and the bright pink form is designed to be carried by a patient and honored at hospitals and nursing homes, as well as by emergency medical technicians.

With a Massachusetts DNR order, in contrast, patients’ wishes must be redocumented each time they enter a new hospital, nursing home, or other medical facility, and a physician’s signature is required each time.

Also, a special DNR must be obtained for the home, if the patient wishes to die there without the interference of EMTs responding to a 911 call.

“We can’t withhold CPR if the Do Not Resuscitate order is not filled out completely,” said Lieutenant Christopher Stratton of Boston’s Emergency Medical Services.

In some cases, he said, his ambulance crews have had no choice but to try to revive an elderly patient in cardiac arrest, even though family members insisted their loved one wanted to be left alone or they showed incomplete, or unsigned, DNR forms.

Stratton said properly completed DNR orders for the home should be placed prominently, such as on the refrigerator door.

A DNR order is typically discussed only with the elderly and patients with serious chronic conditions. Among end-of-life documents, it is the least well known. According to a 2005 survey of Massachusetts residents over the age of 50, roughly one out of three had never even heard of DNR orders. Yet, nearly everyone was familiar with healthcare proxies (a legal document that authorizes a person to make medical decisions for someone who is incapacitated) and living wills (written guidelines for end-of-life care), though that document is nonbinding in Massachusetts.

Saltsman, who tries to raise the subject of DNR orders for all his elderly patients, said families ignore them at considerable risk. For the elderly and very sick, aggressive CPR often breaks fragile bones, and causes internal bleeding.

One national study found that less than 5 percent of chronically ill elderly patients revived by CPR live long enough to be discharged from the hospital, and the fraction that survive are a far weaker version of themselves, often neurologically impaired.

“There is a strong likelihood they are not the same person as they were before,” Saltsman said.

Difficult image to bear

For Batson, it was the image of her frail mother being revived and connected to a breathing machine without being able to speak that caused her to dwell on a signed DNR order. She and her brother were committed to having their mother spend her final months in her home, not a nursing home. They had to make sure their mother’s wish to die without CPR would be honored under all circumstances, including if an EMT arrived in her Chelmsford apartment.

When autumn came, Batson had come to the dreaded realization that she – as healthcare proxy – might be the one to have to sign the order. Her mother’s mind was clearly declining precipitously, especially after a brief hospitalization in July for chest pains. By late summer, Batson was living full time with her mother, chasing away fictitious cats that her mother claimed were roaming the apartment. Batson also had put up “No Children Allowed” signs outside the bedroom door, playing along after her mother complained that children were hiding under her bed.

Batson regretted that she had not pulled the DNR form out of the drawer, pushed away her fears, and talked directly with her mother about the document. Her mother had not raised the topic either, and at times Batson wondered whether her silence had some kind of meaning. But then she would remember that when her father was dying, her mother had been clear that she wanted to go peacefully. So Batson said nothing, wanting her mother’s dwindling days to focus on happier times.

She often flashed back to the mother of her past. Married to Edward Russell, the Tennessee native raised two children in Lexington while working full time as a lab technician. A slender woman with brown hair, she was a talented seamstress who tended the garden with her husband. She was at a loss when her husband of 61 years died in 2005, though she stayed busy keeping up with the lives of her two grown children, three grandchildren, and four great-grandchildren.

Throughout the past year, it was so hard to bring up any topic that would remind Batson – and her mother – of the end. But having worked in elder care, Batson has always believed the elderly deserve the right to control their own end-of-life medical decisions as much as possible and sign their own DNR forms.

“I wished I had done it earlier,” she recalled. “We should have just done it.”

On the Monday morning before Thanksgiving, Saltsman rang their apartment buzzer, responding to Batson’s request to make a house call on her mother.

When the doctor greeted Russell, who held a walker, she recognized him instantly, letting out her trademark giggle. Batson said her mother has always adored Saltsman, chair of Lahey’s geriatric medicine department, usually responding to any encounter with him “as if Elvis had arrived.”

For at least a half an hour, he talked with Russell in the living room, and he quickly detected her mind was not all there. She could not remember that Thanksgiving was fast approaching. Batson’s mother also asserted that her brother was in the apartment, but he was nowhere in sight. Also, she talked about longstanding plans to move to a new home, even though there were no such plans.

Russell’s liver condition, called primary sclerosing cholangitis, can cause a troubling buildup of toxins that creates mental confusion.

“My concern is whether she has the mental capacity to make informed decisions,” he said later. “She did not have it.” This meant Russell was not legally able to sign the DNR form.

Saltsman left Russell in the living room with her home health aide, and joined Batson in the kitchen. He had long believed a DNR order was the right thing for Russell, and now it was entirely up to Batson. She had already given this topic so much thought, and she was sure her mother would not want to be revived with chest compressions and plastic tubes.

At the kitchen table, Batson told Saltsman she was ready to complete the DNR form. The doctor signed, and then Batson added her signature.

The document is now taped to the refrigerator door.