“Treating an Illness Is One Thing. What About a Patient With Many?”

This is a good article in a recent New York Times (nytimes.com) about patients with many illnesses, not just one.  A key problem is that these patients end up on many medications.  Here’s an excerpt:

“Doctors know that it’s not right for someone to be on 15, 18, 20 medications,” said Dr. Tinetti, the Yale geriatrician. “But they’re being told that that’s what’s necessary in order to treat each of the diseases that the patients in front of them have.”

Here’s a link to the full article:

http://www.nytimes.com/2009/03/31/health/31sick.html

Treating an Illness Is One Thing. What About a Patient With Many?
Brendan Smialowski
The New York Times
March 30, 2009

Thanks to online friend Joe Blanc for making me aware of this article.

Robin

 

 

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.

—————————

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

“Tools for Meal Time” – good article on dysphagia

The Fall 2008 CurePSP Magazine (psp.org) has a good article on swallowing problems that may be of interest to everyone — not just those dealing with PSP (progressive supranuclear palsy).

I’ve copied the full text below.  At some point, the newsletter will be available on psp.org; I received it in the mail this week.  You can sign up online at psp.org to receive a copy of future newsletters in the mail.

Robin

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Tools for Meal Time
Laura Purcell Verdun, MA, CCC
Speech-Language Pathologist
Otolaryngology Associates, PC
Fairfax, VA

CurePSP Magazine
Fall 2008 Issue

Difficulty swallowing, or dysphagia, is commonly associated with many neurodegenerative diseases, specifically PSP or CBD.  In fact, difficulty swallowing may be one of the early symptoms of this disorder.  Given that complications related to difficulty swallowing are one of the most common causes of mortality, attention needs to be directed towards optimizing the ease and safety of swallowing.

What changes in eating and swallowing should we look for?

There are actually fairly typical behavioral changes with eating in PSP and CBD.  These often include difficulty looking down at the plate, mouth stuffing and rapid drinking, difficulty with self-feeding because of tremor or stiffness, restricted head and neck posture, and occasional difficulty opening the mouth.  These behaviors can make it more difficult to swallow and often contribute to decompensation of the swallowing mechanism resulting in coughing and choking.  Caregivers need to look out for these behaviors, because the person with PSP or CBD often is not aware of these changes.

What are some tools that we can use to help make meal times more successful?

1.  Use a suction machine, toothette swab (a pink or green sponge on a lollipop-type stick), or mouth rinse prior to meals to clear out secretions which may interfere with ease of swallowing.

2.  A firm chair with arms to support sitting upright for proper swallowing alignment is most ideal.

3.  Keep the plate in the line of vision, by placing the plate on top of a book or something similar, or substituting reading glasses for bifocals.

4.  Try experimenting with different plates and utensils.  Plates with higher edges and bottom grips enhance independence with eating.  Downsize eating utensils to limit how much food is being put in per mouthful.

5.  Experiment with different cups and glasses.  Some are just easier to drink out of than others, depending on a handle or even the thickness and shape of the lip.  Straws are generally not preferred because it results in acceleration of the liquid into the throat before it’s ready.

6.  Use a blender or food processor.  The goal is not to eliminate foods necessarily, but consider how they could be prepared difficultly to enhance ease and safety of swallowing.  Multiple consistency items such as fruit cocktail and broth based soups generally should be avoided, so blend them.

7.  A teaspoon can be used to restrict the amount of liquid placed in the mouth for each swallow.

Though clearly not a comprehensive list, here are some specific products that may be of benefit at meal times.  Look for other products available on these web sites as well:

Flexi-Cut Cup allows for drinking without extending the head and neck backwards, 3 sizes available (800/225-2610, www.alimed.com).

Provale Cup restricts the volume of liquid allowed per swallow (800/225-2610, www.alimed.com).

Maroon Spoons have a narrow shallow bowl to restrict how much food is placed on the spoon and in the mouth, come in 2 sizes (800/897-3202, www.proedinc.com). [Robin’s note:  that’s the correct website!  You can also find these spoons at AliMed.]

Less Mess Spoon is designed with holes to keep food on the spoon, or drain away liquid from a multiple consistency food item (800/257-5376, www.theraproducts.com).

Scooper Plate with Non-Skid Base has a high curve to help scoop food onto a utensil (913/390-0247, www.bindependent.com).

Skidtrol Non-Skid Bowl is a melamine bowl with non-skid base (972/628-7600, www.maddak.com).

Are there any cookbooks that may give us some ideas regarding meal preparation for people with trouble swallowing?

Achilles E and Levin T.  The Dysphagia Cookbook.  2003.  Cumberland House Publishing.

MEALS for Easy Swallowing.  2005.  Muscular Dystrophy Association Publications.  [Robin’s note:  the correct link to this book is www.als-mda.org/publications/meals/ The full contents of this book, including the recipes, are available online.]

Weihofen D, Robbins J, Sullivan P.  Easy-to-Swallow Easy-to-Chew Cookbook.  2002.  John Wiley & Sons, Inc.

Wilson JR and Piper MA.  I Can’t Chew Cookbook: Delicious Soft Diet Recipes for People with Chewing, Swallowing, and Dry-Mouth Disorders.  2003.  Hunter House, Inc.

Woodruff S and Gilbert-Henderson L.  Soft Foods for Easier Eating Cookbook: Recipes for People who have Chewing and Swallowing Difficulties.  2007.  Square One Publishers.

If you have any concerns regarding swallowing, be sure to discuss this further with your neurologist and speech pathologist.

 

Resources and Tips from Occupational Therapist

This post is of general interest to both caregivers and those with neurological disorders.

PPSG (Parkinson’s Patients Support Groups, ppsg.org) held its annual “Caregiver and Volunteer Appreciation Luncheon” in September 2008 in Fremont.  One of the speakers wrote a summary of her luncheon presentation — Julie Groves, an occupational therapist.  Julie runs an outfit called Therapy in Your Home, therapyinyourhome.net. Therapy in Your Home provides OT, PT, and ST services in San Mateo, Santa Clara, and Santa Cruz counties at $100-125/visit.  You can also gain access to Julie Groves, as an occupational therapist, through CareSouth Home Health (408/871-9860) if you are in Santa Clara County (and have Medicare home health benefits).

Julie’s summary of her September presentation was published in the latest edition of the PPSG Newsletter, available online.  I’ve copied the text below.

I especially liked this comment:  “Compensate for decreased judgment, memory and comprehension rather than expecting the old level of participation and understanding.”

And the Resources section is terrific.

I’ve copied the summary below.

Robin

—————————-

www.ppsg.org/PPSG_2/Docs/December%202008.pdf  (the summary starts on page 3)

Volunteers Appreciation Luncheon: OT says “Thank You!”
A Speech Summary from Julie Groves, OT
PPSG Newsletter
November/December 2008

– I spoke of my love for my profession of Occupational Therapy with an emphasis on DOING, ENGAGING, CHALLENGING, ADAPTING, COMPENSATING, and making the task ENJOYABLE. Those words describe OT as well as what you do. I spoke of the neuro-research that supports why DOING at the right level of challenge is effective. As Dr. Liang also reiterated, since 1998 we know that brain cells can re-grow, grow more connections and have more efficient synapses. Although some cells may be damaged by PD, you are never too old to learn new techniques. And you, volunteers, might want to go back to school to be an OT!

We discussed specifically:

– Dexterity and using large arm movements: Using art work, washing windows, shooting the rubber band from the morning paper.

– Rhythm: Clapping, drumming, listening and responding to music, applying these concepts to mobility, and dancing (in a wheel chair, behind a wheelchair, both of you holding a walker, rocking arm in arm), and the PD Tango Class at Avenidas Senior Center in Palo Alto.

– Facial exercise and swallow skills: Laugh with the funny faces, use your hands to encourage those muscles to move, pause long enough for a response, sing, and yell.  Make poetry with the KKK and GGG sounds which help the swallow muscles.

– Breathing: Again, yell and sing for fun! Use your hands on the rib cage, encourage breathing into your hands and help expel the air with a firm pressure. Touch almost always makes an activity more meaningful and enjoyable. And while you are at it, be sure to breath out long and slowly yourself!

– Move more: From the audience came discussions of Tai Chi and of the Wii, both known to be beneficial for people with PD. The Parkinson’s Institute is planning training in use of the Wii; call to get on their list. The Wii is the ultimate biofeedback machine, encourages challenge, participation, adaptation for different levels of participation and skill. The grandkids or friends or significant others can play it with you. We discussed Wii sports, Wii dance and Wii Fit. Wii is like your grandkids’ Xbox but interactive. It’s not cheap, but the benefits may make it worth it. Hook up the box to your TV and hold the wireless controller. The TV/box senses how you move (swing a bat, change your balance, launch a bowling ball) and shows the result on the TV screen, giving you immediate feedback and you just WANT to do it again better.

– Finally: take care of yourself. Besides all the usual ways, we discussed:
* Anticipate change, prepare
* Accept help, ask for help
* Compensate for decreased judgment, memory and comprehension rather than expecting the old level of participation and understanding
* Be ready to say “no.” Look ahead; will you be able to do this next year? What will you do on a bad day? Adapt, before you need to, before you get worn down and grumpy. Think through your options, talk about them with your support system.

A question was raised later in the program about why the healthcare community doesn’t address all the other symptoms of PD: constipation, lack of concentration, stiffness and fatigue, depression. Research shows healthcare providers are not comfortable or skilled at talking about these subjects. If you can bring up the subject it is more likely to be discussed, and we are more likely to learn more about how PD is impacting you.

Some resources that were requested:

Places to get equipment and ideas:
* Abledata.com, 1-800-227-0216: ABLEDATA provides objective information about assistive technology products and rehabilitation equipment available from domestic and international sources. Although ABLEDATA does not sell any products, they can help you locate the companies that do. Hint: call and ask, don’t just use the online version.
* SammonsPreston.com
* Ncmedical.com
* Alimed.com

Resources about attending to all the other needs of the person with PD:
* “My Mother, Your Mother” by Dennis McCullough.  “Slow Medicine” advocates for careful anticipatory “attending” to an elder’s changing needs rather than waiting for crises that force acute medical interventions–an approach that improves the quality of elders’ extended late lives without bankrupting their families financially or emotionally
* Handbook for Mortals by Diane Lynn, available in full online
* CodaAlliance.org and the Go Wish Cards for facilitating difficult conversations.

Finally, consider asking for Occupational and Physical therapy each time there is a change of condition. Your insurance probably covers therapy, and it is available through Outpatient or, if you are homebound, through Home Health. In some cases you might need to pay privately for therapy at $80 to $130 an hour. Be sure to explain to the therapist what the problems are that you are experiencing and ask for (demand?) practical solutions, not just more exercises. Help the therapist understand your individual needs.

Thank you, again.
Julie Groves, Therapy in Your Home — OT, PT, ST

 

“Why Doctors Make Mistakes” Article

The author of a very good book “”How Doctors Think” has written a short article on “Why Doctors Make Mistakes” for the upcoming issue of AARP The Magazine. A copy of that article is below. Fuirther down is an email from May ’07 (sent to the local support group; not posted here), around the time with Dr. Groopman’s book was published. The PBS Newshour interview is still available (the longer RealVideo version).

http://www.aarpmagazine.org/health/why_ … takes.html

Why Doctors Make Mistakes

By Jerome Groopman, M.D.
September & October 2008
AARP The Magazine

Too often, physicians make snap decisions. Here are three questions to help get you to the right diagnosis

Not long ago I spoke with a middle-aged woman whose mother had been misdiagnosed with Alzheimer’s disease. The elderly woman’s memory was fading, and her family was close to admitting her to a nursing home. Luckily, the family decided to get a second opinion from a neurologist at a different hospital. It turned out the woman did not have Alzheimer’s at all but, rather, vitamin B12 deficiency, a well-recognized cause of dementia. Her mild anemia, also due to vitamin B12 deficiency, had been written off by her internist as being due to “old age.” Injections with the vitamin fully reversed the anemia and restored her thinking.

Unfortunately, medical misdiagnosis is not a rare phenomenon. About 15 percent of all patients are misdiagnosed, and half of those face serious harm, even death, because of the error. Contrary to the general impression that most misdiagnoses result from a technical foul-up, such as mislabeling someone’s X-ray or mixing up a blood specimen in the laboratory, most cases are due to mistakes in the mind of the doctor.

Most errors are due to mistakes in the doctor’s thinking.

How do doctors think through a case? Making an accurate diagnosis involves arranging the information from the patient’s symptoms—findings from physical examination and laboratory tests—into a pattern. A doctor then superimposes this pattern onto a template of the typical case that exists in his or her mind. But this effort at pattern recognition doesn’t always work. Why not?

First, there may be incomplete or misleading information. Patients may not feel comfortable reporting all their symptoms to a doctor—or, as studies show, physicians may prematurely cut off a patient who is reciting his or her problems (in fact, research reveals that most physicians interrupt a patient within 18 seconds of beginning an interview). Second, pattern recognition is difficult because cases may not be “typical.” This means that diseases can have different manifestations, sometimes quite subtle, because every individual is different. Most significant is how the doctor selects the clinical elements, weighs their importance, and arranges them in his or her mind, a process that can result in several different patterns, leading to quite different diagnoses.

There are three major cognitive mistakes that can occur in the mind of the doctor and lead to misdiagnosis. The first is termed anchoring, meaning the tendency to grab on to the first symptom, physical finding, or laboratory abnormality. Such snap judgments may be correct, but they can also lead physicians astray. A second common cognitive error is termed availability. This refers to the tendency to assume that an easily remembered prior experience—what is most readily available in the physician’s memory—can explain the new situation he or she is trying to diagnose. The third mistake in thinking is termed attribution, and this accounts for many of the misdiagnoses in the elderly. Attribution refers to the tendency to mentally invoke a stereotype and “attribute” symptoms to it. Alas, often this stereotype is a negative one, such as an older person who is seen as a complainer, a hypochondriac, or a person unable to cope with his or her naturally declining abilities. The doctor ignores the possibility of an illness not specifically linked to “old age,” as in the case of the woman with B12 deficiency. Imagine how much it would have cost in physical resources—not to mention emotional ones—to keep her in a nursing home for the rest of her life.

What can patients do to help prevent medical thinking from going astray? I have formulated three simple questions to ask. It is quite appropriate for patients and their families to pose these questions to their doctor when he or she is making a diagnosis.

1. “What else could it be?” This question helps to prevent an anchoring error or an availability error, where a diagnosis is formulated too quickly in the physician’s mind because it corresponds to the initial symptom or abnormality (anchoring) or because it is most familiar to the doctor (availability).

2. “Could two things be going on to explain my symptoms?” In medical school doctors are taught to be parsimonious in their thinking, meaning they are taught to identify a single cause to explain a variety of complaints and symptoms. But sometimes a patient can have two medical problems simultaneously. Physicians sometimes stop searching once they find an initial problem, even if the patient does not fully recover.

3. “Is there anything in my history, physical examination, laboratory findings, or other tests that seems not to fit with your working diagnosis?” All physicians tend to discount information that seems to contradict their hypothesis. This bias can lead a doctor down the wrong path; his or her anchor diagnosis may be so firmly fixed that this leads to ignoring contradictory data.

I have found that smart and dedicated physicians are able to explain their thinking, and they are able to put into clear and accessible lay language how they arrived at their working diagnosis. In some instances these questions may cause the doctor to go back and reexamine assumptions, to think again, and to come up with a different, and now correct, diagnosis. All doctors want the best treatment for their patients, and the best treatment involves the most open-minded thinking.

Jerome Groopman, M.D., is the author of the New York Times bestseller How Doctors Think (Mariner Books, 2008).

___________________

Date: Tue, 15 May 2007 22:39:34 -0700
To: Local Support Group
From: Robin Riddle <[email protected]>
Subject: “How Doctors Think” Author on PBS Newshour

There was a great interview tonight (5/15/07) on the Newshour with Jim Lehrer on PBS with a physician who wrote a book called “How Doctors Think.”

You can find it online at this web address http://www.pbs.org/newshour/health/ and click on “Physician-Author Takes Readers Inside Doctors’ Minds.”

If that doesn’t work, then go to http://www.pbs.org/newshour/ and click on “Doctor Explores Decision-making and Diagnoses.”

(Note that the RealVideo version is an extended interview, longer than what was shown on TV. The extended interview is more interesting as it has more examples. You might be able to link directly to the extended video version by clicking here:
http://www.pbs.org/newshour/video/jan-j … opman.html )

Here’s a brief description of the interview from the Newshour website: “Harvard Medical School’s Dr. Jerome Groopman came up with the idea for his book ‘How Doctors Think’ while watching medical students make snap judgments while diagnosing patients… Many medical mistakes occur because doctors make snap judgments… Groopman talks about how doctors get diagnoses right and sometimes wrong.”

Dr. Groopman’s research shows that 15% of all people are misdiagnosed. He indicated that some experts believe the correct figure is 20 to 25%. In half of those cases, serious harm results.

He lists three kinds of thinking errors, and says that medical students, residents, and senior physicians are not taught to be aware of these errors. He also says whether the doctor likes or doesn’t like a patient can play a role in making a misdiagnosis.

Dr. Groopman speaks candidly about the fact that some misdiagnoses are fatal. And he discusses his own experience as a patient who had a hand problem, saw 6 surgeons, and got 4 different diagnoses. The doctor himself was a victim of medical misdiagnosis.

What should patients do to help ensure their doctor reaches the right diagnosis? He says it’s important for patients to know how doctors think. Some questions are important to ask the doctor when the doctor gives the diagnosis and later when the situation doesn’t improve:
* What else could it be?
* Could two things be going on at once?
* Have you found anything (any lab test, xray, physical finding) that contradicts what seems to be the diagnosis?

He had specific advice for parents: parents should tell doctors what their worst fears are. This needs to be addressed.