Oregon “Death with Dignity” Advocate Dies with CBD

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A local support group member forwarded me this info about a retired Oregon MD diagnosed in 2006 with corticobasal degeneration, who died last Sunday, assisted by Oregon’s Death With Dignity Act, which he had championed:

Might you have heard about the death of Dr. Peter Goodwin of Portland, OR?

He is referred to as the Father of the Oregon “Death with Dignity” law, or assisted suicide, that allows a terminally ill patient to take their own life with the help of lethal meds supplied by a Doctor. The Oregon law was passed about 17 yrs ago.

He had been diagnosed in 2006 with CBS, and chose to end his life this past Sunday, 3/11/12, at 83 yrs old.

Google “Dr. Peter Goodwin” and you will find many sites about his work, and his passing. Here is one site that includes an interview with him:

http://www.cbsnews.com/8301-504763_162- … -10391704/

(This is Robin, again….)

In the video interview with Dr. Goodwin, produced by the organization Compassion & Choices, he explains that he’s been diagnosed with a “terminal illness” for which there is “no treatment.” (2:04) He says that he’s discussed his decision to die with dignity with his four children, all of whom are “regretful but supportive.”

I don’t know many with CBD with this level of clarity and speaking ability six years after a diagnosis.

“Types of Care”- adult day programs, care facilities, etc.

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This post is probably of interest to newcomers to our group or those facing new declines who need to know their options for care.

A recent CurePSP (psp.org) magazine article describes types of care, including:

* adult day programs
* rehabilitation, including in-home therapy
* in-home care
* long-term care facilities
* vial of life

Although this article on types of care was published a magazine for those dealing with progressive supranuclear palsy (PSP), the list of care options is not PSP-specific.

Robin

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www.psp.org/file_download/b9b6fe18-8ac0-4354-8e23-b35734be1767  –> article starts on page 2

Types of Care
Diane B. Breslow, MSW, LCSW, Northwestern Medicine Parkinson’s Disease and Movement Disorders Center
CurePSP Newsletter
March/April 2012

What follows is an overview of the spectrum of care for adults with physical impairments or chronic disease. Although not PSP-specific, all of the levels discussed are potentially appropriate for people with PSP. That said, it is most important and acceptable for family caregivers to inquire as to a staff’s experience with PSP. Family members can and should make providers aware of the symptoms and needs of PSP patients, and offer to ascertain PSP educational materials, speakers, and in-service training for staffs.

ADULT DAY PROGRAMS
Older-adult day programs (also referred to as adult day care centers) are community-based, day-long social and recreational programs provided in a safe, secure group setting. Participants typically exhibit cognitive, social, and/or functional limitations, and therefore require the supervision and structure that adult day programs provide. Most programs also offer some health-related services, such as medication reminders. Other features of adult day programs include transportation, exercise, social work services, lunch/snack, socialization and peer support, on-site/on-call nurses, and assistance with or supervision of eating, walking, and toileting.  In addition to the benefits to participants, adult day programs afford family caregivers a respite from the demands of full-time caregiving for someone who needs constant supervision. Services and fees for adult day vary from program to program, and state-to-state.

REHABILITATION
Even with a degenerative disorder such as PSP, rehabilitation therapies can offer helpful safety instructions and can help to re-stabilize an individual’s functioning. The skilled rehabilitation therapies of physical therapy, occupational therapy, and speech therapy are provided in multiple different settings: day treatment centers, one’s home, in-patient units of rehabilitation institutions, and out-patient centers. Skilled therapy is an order prescribed by a physician; in the case of PSP, either the movement disorders neurologist or physiatrist (rehabilitation physician) would write the order. Therapy is covered by Medicare and other health insurance companies, so long as the person is not already receiving insurance-covered therapies in more than one setting at the same time.

In-patient rehabilitation – large, dedicated rehabilitation institutions offer in-patient rehab stays as well as all other levels of rehab treatment. To qualify for an in-patient rehab unit, one must meet specific criteria related to the ability to participate in and benefit from daily, intensive, multiple therapy sessions.

Day rehabilitation programs – In addition to offering in-patient and out-patient rehabilitation, some rehabilitation institutions also offer Day Rehabilitation: a concentrated, rather intense, community-based, day-long treatment program that encompasses all of the skilled rehabilitation therapies: occupational therapy, physical therapy, and speech therapy. To qualify, a patient must be able to undertake 3 hours of therapies each day.

Out-patient therapy ­ this is provided in a community clinic setting. Therefore, the patient must be able to leave the home for therapy. Unlike day rehabilitation, out-patient therapy implies that one is receiving one-hour sessions of physical, speech, or occupational therapy.

In-home therapy ­ this refers to physician-ordered, skilled, rehabilitation therapy — speech, physical, or occupational — for patients who are home-bound and unable to travel to an out-patient therapy setting. A registered nurse usually oversees the home rehabilitation care. During the time that a case is open for home rehab, the patient is also eligible to receive a bath aide. However, once the course of rehabilitation ends, so too does the bath service.

IN-HOME CARE
In-home care refers to personal care with activities of daily living, such as bathing, grooming, and dressing. In-home care providers are also called companions, personal aides, or personal caregivers. They work either for themselves privately, or for an agency that takes responsibility for setting fees, making caregiving assignments, insuring and bonding the caregivers, and training them. In-home caregivers can be employed by task, e.g. bathing assistance, or by blocks of time, e.g. 4 hours or 8 hours or even live-in. For the most part, personal care is a private expense. Medicare or health insurance does not cover it; however, it may be covered by one’s long-term care insurance policy. Most states, through their local area agencies on aging, offer a capped number of hours of companion services to older adults.

LONG-TERM CARE FACILITIES
Long-term care facilities are listed on a spectrum from most to least independent.

Independent living is a broad term that encompasses senior apartments, active communities, and retirement homes. These types of buildings are not licensed to provide personal care or nursing services, although residents can and do contract for private duty care just as they would in their own home or apartment (See in-home care section). All of these more independent facilities offer amenities such as 24-hour security, transportation, and activity programs. Whereas senior apartments and active communities may not serve meals in a central dining room, retirement homes usually do have group dining.

Assisted living refers to an entire building, or a specified part of a building, that is licensed to provide personal care 24 hours/day. Caregivers are trained, certified aides who assist with daily tasks such as bathing, dressing, escort to meals, medication set-up and dispensing, and routine checks on residents. A registered nurse sets up and stores a person’s medications, and an aide can deliver the medicines to the resident. Assisted living also provides housekeeping and social programs, as well as transportation to and from medical appointments, errands, and group outings. Some facilities may offer rehabilitation therapies, hospice care, and specialized care for different disorders.

Continuing Care Retirement Communities (CCRCs) are residential, gate-secured campuses that, with a substantial entrance fee, guarantee lifelong care beginning with independent living (cottages or apartments) and progressing on to assisted living and then skilled (nursing home) care.

Nursing homes are institutions that are licensed and regulated by state and federal governments to provide skilled care twenty-four hours a day. Registered nurses are on-duty around the clock, as are certified nurses’ aides. Physicians serve as medical directors of skilled care facilities. Everything from activities to nutrition, personal care, environmental safety, staff-to-resident ratios, etc. must meet state and federal guidelines. Within a nursing home facility, there are also levels of care. Some residents require only “custodial care,” or personal care with their activities of daily living such as bathing, dressing, or toileting. Other residents require the services of a nurse for the skilled care of wounds, intravenous medications or feedings, or managing of machinery such as respirator or ventilator. Medicare and supplemental insurance policies cover 100 days of nursing home care that results from a hospitalization and meets the criteria for rehabilitation therapies. After the rehab portion of the stay, residents pay privately and/or by means of their long-term care insurance.

Palliative or hospice care is compassionate, supportive, interdisciplinary end-of-life care for patient and family. Such care can occur in one’s home, in a long-term care facility (nursing home), in an in-patient hospital unit, or in a free-standing dedicated hospice building. In order to receive hospice care, one must have a physician’s order, followed by an evaluation by the hospice nurse or doctor. Hospice care is covered by Medicare.

VIAL OF LIFE
No matter where your loved ones live or participate in programs such as those described here, they should always keep with them, or in a specified location in their living space, a “Vial of Life.” This paper, which some people roll up and keep in a bottle in their refrigerator ­ hence “Vial of Life” ­ should contain the following information:

• Date updated
• Name, address, phone number
• Medications/dosages/frequency or times
• Drug allergies
• Medical conditions
• Surgeries (including year)
• Blood type
• Power of attorney for healthcare
• Two emergency contacts

Because information can change, you should regularly review and update the Vial of Life.

Parkinson-Plus Syndromes on emedicine

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emedicine, part of Medscape (medscape.com), is a terrific resource for physicians.  Access if free, though you may have to register for an account.  Many of the articles are understandable by lay people.  The articles are reviewed by MDs and updated periodically.

I like this overview of the “Parkinson-Plus Syndromes”:

emedicine.medscape.com/article/1154074-overview

This particular overview includes these sections:

* Clues to Diagnosis
* Multiple System Atrophy
* Progressive Supranuclear Palsy
* Parkinsonism-Dementia-ALS Complex
* Corticobasal Ganglionic Degeneration
* Diffuse Lewy Body Disease
* Management of Parkinson-Plus Syndromes

Of course MSA, PSP, CBGD (now called CBD, short for corticobasal degeneration), and DLBD (more often called Dementia with Lewy Bodies) are part of our local support group.

Treating blood pressure, bladder, constipation, etc. – article by Dr. Golbe

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Dr. Lawrence Golbe is a movement disorder specialist at Robert Wood Johnson Medical School in NJ.  He is an expert on progressive supranuclear palsy (PSP), and is the head of the CurePSP Science Advisory Board.  In the latest CurePSP (psp.org) newsletter, there’s a short article he authored on palliative measures in multiple system atrophy (MSA).  He defines “palliative measures” as those that will “lessen the severity of…symptoms and…improve both the quality and quantity of life.”

Dr. Golbe addresses these symptoms or treatments:
* anti-parkinson treatment
* low blood pressure
* bladder problems
* constipation
* swallowing problems

As many of these symptoms are found in all the disorders within our group (MSA, LBD, PSP, and CBD) – not just MSA – the article may be of interest to everyone.

The full article is copied below.

Robin

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https://web.archive.org/web/20120514113101/http://www.psp.org/file_download/b9b6fe18-8ac0-4354-8e23-b35734be1767 –> article on page 3

MSA: Palliative Measures
Lawrence I. Golbe, MD, UMDNJ-Robert Wood Johnson Medical School
CurePSP Newsletter
March/April 2012

There is still no cure for MSA nor any way known to slow its progression, but there are many ways to lessen the severity of the symptoms and to improve both the quality and quantity of life. These are called “palliative” measures.

Antiparkinson treatment: Many people with MSA who have stiffness of limbs and slowness of movement find that carbidopa/levodopa, the main drug used for Parkinson’s disease, can help those symptoms. The duration and intensity of the drug’s effect is usually less than in Parkinson’s.

Low blood pressure: There are many ways to treat low blood pressure. If one is taking drugs or limiting salt intake to treat what once was high blood pressure, these measures could be reduced, but only under the supervision of a physician. Drugs that can increase the blood pressure include fludrocortisone (Florinef), midodrine (Pro-Amatine) and pyridostigmine (Mestinon). There are a handful of other drugs that are often worth a try. Non-drug measures include increasing the salt and fluid intake (if there are no heart or kidney problems that would make that risky), elevating the head of the bed by putting six-inch blocks under the legs at that end and using pressure stockings.

Bladder problems: The need to urinate frequently can be reduced by drugs that inhibit the muscle that empties the bladder. These are called “peripherally acting anticholinergics” and are widely advertised in the popular media.

Constipation: This symptom in MSA is treated as in any other setting. It is best to start with a stool softener (docusate; Colace) or a bulk-forming agent (Metamucil).

Swallowing problems: This is best treated by changing one’s habits regarding choice of foods and food textures, chewing technique and swallowing technique. This is best assessed by a trained speech/swallowing pathologist and often guided by an x-ray video of the person swallowing various food textures, called a “modified barium swallow.”

For severe swallowing difficulties that present a high risk of “aspiration” (food going down the wrong pipe into the lungs), a soft rubber tube can be placed through the skin of the abdomen directly into the stomach (“percutaneous endoscopic gastrostomy” or “PEG”). But this step should not be undertaken lightly. If such a technique becomes necessary to prevent aspiration, a careful decision should be reached by the patient, family, physician and other available advisors. They may decide that while the PEG may prolong life, the quality of life at that point in the disease becomes too low.

“The cost of dying: It’s hard to reject care even as costs soar” (SJMN)

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San Jose Mercury News author Lisa Krieger has started a wonderful series of articles on “the cost of dying.”  In this initial poignant article, she shares the sad story of her father in the ER and then in the ICU.

Here’s a link to the article:

www.mercurynews.com/cost-of-dying

The cost of dying: It’s hard to reject care even as costs soar
By Lisa M. Krieger
San Jose Mercury News
Posted:   02/05/2012 08:14:05 AM PST

I encourage everyone to read it so that you can learn from Ms. Krieger’s story.  Many of the comments posted are worth reading as well.

At the end of the article, she writes:

“Modern medicine had carried Dad’s body beyond what it could bear. Even the best life is finite.”

In my humble opinion, these were the points in the story where things could have improved:

  • Ms. Krieger could’ve discussed the DNR (do not resuscitate) order with her father early on.  She could have learned if he wanted to have a DNI (do not intubate) order as well.
  • Did she not have her father’s advance care directive? His POLST would have indicated if he wanted to be intubated.
  • Why wasn’t her father placed on hospice right after his fall?
  • Why didn’t Ms. Krieger have the DPOA and DNR documents with her at the hospital?  Or the advance care directive or POLST?

Please have the “advance care” discussions NOW with all of your family members!

Robin