Saturday, November 3, 2012

An Oregon Story: Living With Dementia

By Kathy Kaditz

In November 1997, Oregon became the first state to pass a Death with Dignity Act.  Popular support for the measure grew out of the strong libertarian tradition that has been part of Oregon since it became a state in 1859.  Opposition to the bill was seen as “coming from organized groups, out of state,” which was perceived as a negative. 

I know because I grew up in Portland, Oregon; I chose to move to Massachusetts in 1972, where I started my teaching career, married and had two children. Then, in 1996, my husband accepted a job in Portland, Oregon. We moved our teenaged children from Newton to Lake Oswego where our daughter attended four years of high school. We were able to relocate to Massachusetts in 2000. 

So, I was an Oregon voter who supported the Death with Dignity Act when it was passed. Since 1997, 935 prescriptions have been written. 596 people have elected to fill and use their prescriptions. About one in every thousand deaths in Oregon since 1997 has been attributed to physician-assisted suicide, or “medically induced death.” 

The group most likely to make the request are people who have terminal cancer, are over 55, are white, are 50% more likely to have graduated from college than the average Oregonian, were enrolled in hospice care and had some type of insurance. Nearly 7% were referred for psychological evaluation. 94% died at home. Nationally, roughly 67% of people die in hospitals.

Among people who requested the prescription, the greatest fears cited were loss of autonomy, loss of dignity and loss of enjoyable activities. Only 22.6% cited fear of poor pain management. The medical community in Oregon has become more supportive of the measure since its enactment. Public sentiment remains with the act. 

And now a personal experience about the limitations of the statute:

In 2010, at age 90, my mother, who lives in Portland, was diagnosed with early stage Alzheimer's. She had seen her father suffer through this disease; she saw the toll it took on her mother. She said she did not want to live when she could no longer listen to books or garden, and she wanted to die in her own home. She was adamant about the last point. 

Six months after her diagnosis, in my presence, my mother asked her physician for a prescription to end her life, which she could use in the future, when she “no longer had her wits about her or had to leave her home.” Her physician told my mother that she was not eligible for a prescription under the law. Her physician added that she was personally opposed to writing that prescription under any circumstances and appeared visibly annoyed my mother had made inquiry. On another visit, she again initiated the conversation with her physician; at which point her physician diagnosed her with severe anxiety, suicidal ideation and depression. She referred her for therapy. Her family was invited to participate, which we did. She went to four or five sessions before she terminated, stating to the therapist, “You can't help me if you won’t write me a prescription.”

Subsequently, a neuropsychological evaluation, an MRI, confirmed the Alzheimer’s diagnosis. We tried Aricept, changed primary care doctors and began experimenting with various anti-depressant and anti-anxiety medications. After six months we added an anti-psychotic medication to help with symptoms of agitation, anger, paranoia and delusional thinking. 

It took another year to find the right cocktail of medications to manage her behavior and stabilize her mood while maintaining her balance and mobility, with the goal of keeping her home. Currently she is is doing as well as can be expected. My brother and sister-in-law live with her; I travel to Oregon every eight weeks to relieve them. She has 48 hours of home care per week, the most we can afford. She qualifies for 24/7 care.

Her Alzheimer's has now progressed to the moderate stage; she is otherwise healthy. She has mentioned ending her life by refusing to eat or drink. However, she does not sustain that thought nor do I think she is she is capable of acting on it. 

She is 92, we can afford to keep her home through 2013. After that, her long-term-care insurance will only cover her in a residential facility. She has lived in her home for 63 years. It is likely I will have to file for guardianship to move her involuntarily. If she lives to be 96, not uncommon in her family, she will exhaust all her financial resources and we will have to apply for Medicaid to maintain her in a facility. Medicaid expenses are a significant factor in the federal budget deficit crisis. 

Meanwhile, she can no longer reliably identify her immediate family. She is losing the ability to fold laundry, an activity she has been able to do the last two years. She was a wonderful gardener; she can no longer pot a plant even if you show her first, give her with step-by-step instructions and caregiver assistance. 

This is not what she wanted. This is what she did not want to happen to her or to her family. 

I hope by the time I am at her age and stage of life, I have more legal choices than she does now and the statute is broadened. To some this is a dreaded slippery slope. To me, it would be a relief.

I would like to introduce you to my mother. In September 2011, our daughter Emily wanted her grandmother to escort her across the stage to receive her white coat, as a first year medical student at U. Mass. My mother did not meet the criteria to be an escort… the ability to follow instructions. However, Chancellor Collins, kindly made an exception. The extra effort was rewarded and my mom almost followed directions; she did miss the memo about exiting the stage promptly as you can see in this clip  (you'll need to fast forward to 1 hour, 13 minutes, 16 seconds).

This year, Chancellor Collins’ assistant asked Emily if he could read her thank you note at the close of this year’s white coat ceremony. This is an excerpt from his speech.

“Following last year’s White Coat Ceremony, the event’s organizers received the following thank you from a student who had requested that her grandmother, with the advances of Alzheimer’s disease, be allowed to present her with her white coat. I am writing to tell you how grateful I am, if possible, more now than then, for everything you did to allow my grandmother to participate in the White Coat Ceremony. As the grandchild with the strongest bond to my grandmother, I was very much unprepared for the progression of her disease . . . She returned to Oregon with moments of clarity that included knowing that not only had she put my white coat on, but she “wore high heels, not old lady shoes.” Until a few weeks ago, she knew who I was only because of her excitement about being involved in the ceremony and having a granddaughter in medical school. Now, she has, well, regressed . . . None of us are who we should be to her . . . For the rest of my life I will never forget that my last true visit with the grandmother I have always known and loved was the weekend of the White Coat Ceremony . . . that memory . . . will be with me forever.

The day after the white coat ceremony, my mother had her first grand mal seizure. She was sitting on a counter top stool in our kitchen and toppled onto her head, still in the chair without breaking her fall. She was taken by ambulance to the hospital. She required stitches and was kept overnight for observation. An EEG revealed that the seizure was more likely related to her dementia and not her medications.


Kathy Kaditz is a founding member of Community Voices in Medical Ethics and the Community Ethics Committee.

1 comment:

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