Saturday, 27 July 2013

The case for an Advance Care Directive –dying with dignity

Jenn and Michele
–she is so proud that I wrote about her in my book!
We created a Celebration of Life for her!
Many know how long and hard I advocate for clients. We need to know their stories. We need to know how to help ourselves, as well.
Many, in cottage country, desire to die at home, in dignity. This is a personal choice. One best made by the entire family. Not all can manage the care of a palliative patient. It is emotionally, physically, mentally draining. My mother died at home. Dad died in long-term care.

There are three parts to Advance Care Planning to ensure that you die with dignity (see below). While Margot Bentley created an Advance Care Plan, the long-term care believed that her signed plan was precluded by their need to care for their resident. This is wrong on such a basic level.

This is a terrible situation in B.C., where they have one of the best hospice programs in Canada. This only works if you are sentient, do not have dementia, and are able to access hospice care.
Margot Bentley was adamant, in 1991, writing up her Advance Care Plan. She did not want extreme measures. Her daughter, as duly appointed decision-maker, respected her mother's right to dignity. The LTC insists on spoon-feeding her; her Advance Care Directive says she did not want this to happen.

Have the conversation members and supporters have been incensed about the case of Margot Bentley, a woman in BC who has dementia and is now in an advanced state of extreme disability. Despite having taking pains to prepare a living will in which she deliberately rejected "nourishment and liquids" she is being kept alive by staff at the Maplewood Care Facility in Abbotsford who are prodding her mouth with a spoon and feeding her pureed foods in a bid to prolong her days.

 I have had several occasions when I have helped a resident, or their families, self-advocate. It is easier at home, where you can control what occurs. The issue, then, is accessing Primary Care (doctors, nurses, pain medications) when you need it. House calls tends to be a thing of the past. Nurses, hired by RFP by the CCAC, are working for for-profit agencies, and have their own protocols. If you have money, you can buy or rent equipment and supplies. If not, you are at the whim of the agency.

Michele has a 'secret admirer!'
The problem with long-term care is that all staff are trained to manage each person the same way, following the same direction. This is right, to prevent abuse, but not if special circumstances. My paraplegic friend, in pain 24/7, wanted to have dinner in her room.

Staff believed that Ministry of Health and Long-term Care policy and procedures precluded this. It is not so. The Ministry inspector, whom I phoned, and requested she visit my friend, managed an intervention, changed their policy, and Michele no longer has to eat P.B & J sandwiches alone in her room at dinner time. She experiences extreme pain when placed in a mechanical lift. She was forced up for breakfast and lunch, and preferred to stay in bed for dinner. There isn't enough staff to put her back into her bed when she needs it, and would stay in her reclining wheelchair until two staff could accommodate her.

The shame is that Margot Bentley made a conscious decision, legally, in writing, and her daughter was trying to enforce it. The Fraser Valley Health Authority ignored her directive.

I cannot tell you the number of people I have seen spoon fed, while in a coma. This is a personal
A mechanical lift requires 2 to operate it,
to put the resident in and out of bed.
decision, and one that must be made individually.
We regularly went in and fed my father either breakfast or dinner, when he no longer could manage to use a fork or knife. I have done the same for several clients over the years.

It broke my heart when one man, without teeth to chew, complained to me he was hungry while waiting for his lunch. The retirement home where he lived was unable to provide staff to feed him at lunchtime when the others were eating. They pureed the regular meals, and, after all were fed, brought his 'meal' and I fed this to him. I bought Ensure, something he could drink, as no one had brought such in for him. After this he regained some strength, and rallied for a couple of months.

Here is what you should know, from Wanda Morris. Visit for more information

1. Create an advance care plan
2. Appoint a substitute decision maker
3. Review and update it annually.


The Furry Gnome said...

Very thoughtful, something we should probably think about.

Red said...

You are in a very challenging area. The B.C. case is very sad.
Many people including myself delay making directives. Unless directives a very specific there is too much wiggle room.
I applaud you for working so hard in this very needy area.
Someone always fed my Dad his dinner. They wanted to make sure he had one good meal a day. Dd was up for his lunch on the day he died.

Yamini MacLean said...

Hari OM
Jenn, this is heart-wrenching reading for me for, as a homoeopathic physician and remedial therapist, I chose to specialise in aged and palliative care. Sadly, I saw first hand the sort of thing described here, but as an "out-worker" held no sway in the operations of the organisation. Much is good, but all too often, it comes with the bad when one is forced to rely on 'systems'.

I admire you greatly for your strength, compassion and courage for advocating in this way. Blessings. YAM xx

Jennifer A. Jilks said...

You are kind, YAM!