Monday, November 17, 2014

Palliative care experts say it's time for Canadians to talk about end of life care

Quality of life over quantity

My hubby and I have talked about what we expect from end-of-life, even in an emergency. We both agree that we must be content, comfortable, and have realistic hopes. No tube feeding for us. No time hooked up to machines. I've made this clear to my adult children, as well.

The media is full of great examples of people living long, productive lives:
  • Tommy Chong is 76, on Dancing With the Stars.
  • Betty White is 91.
  • Queen Elizabeth is 88. 
  • Jimmy Carter just turned 90.
But these entertainment examples are outliers. It isn't the norm. You must give your family and children an explanation of what life is like and what you expect to get out of life.
I hear, often, of families who run for yet another health intervention, which has little likelihood of success and simply prolongs a terrible living situation.

What is it you hope for in your life?

  • Creativity? 
  • Being outdoors?
  • Happiness: what does that look like? 
  • Productivity: what would you like to accomplish? 
  • Friends: do you want to be with them? 
  • Do you prefer being solitary, with books and music?
  • Do you have things to do, things to see, people to love?

Physician-assisted Suicide

Those who promote the physician-assisted suicide movement perhaps are in the minority. Perhaps, we should question more the efficacy of particular interventions at particular points in our lives.

  • The question is, do you have dementia? 
  • Are you fully present in your life, able to enjoy life with little pain or mobility issues. 
  • Are you able to fulfill your ADLs? Banking, shopping, cooking, doing laundry, cooling, cleaning. These are chores that, if you are physically disabled, fall to others late in life. 
  • Caregivers are stressed and at risk. Family members, often daughters, pick up the slack.

The discussions on health and healthcare begin with your physician

It was an excellent discussion on palliative care, and humane care by physicians.
  1. Firstly, physicians should explain the patient's condition.
  2. Next, outline treatment options: i.e., surgery, chemo, radiation, feeding tube, etc.
  3. The side effects of the various treatments should be clear.
  4. Then, they should give the statistics according to the disease trajectory, including the efficacy of certain treatments, including no treatment. 
  5. The impact of quality of life vs. the quantity of life.
Families should have these discussion before it becomes an issue. That said, they answers can change, depending upon circumstances, but it should be ongoing. I don't want to lie, paraplegic in a bed for years. Some want to go when they are not functioning mentally anymore. 

These are the questions physicians must ask their patients

  • What is your understanding of your condition?
  • What are we working towards? 
  • Which goals do you aspire to: i.e., being social, being able to drink beer and watch TV, being ambulatory and mobile, being able to communicate with family and friends, or read a book? 
  • What are your fears, and your worries?

Questions patient must ask their doctors

A 2014 book, Being Mortal, by Atul Gawande, speaks to these concerns. Too many people die in hospital, uncomfortable, or end up in the ER. He explains the reasons why this happens.
He tells us that terminal lung cancer patients who had end-of-life talks started hospice sooner, stopped chemo earlier, and lived 25% longer.
He tells us that those who are given the option of heavy drugs, often do not need them, because they worry less about being in pain since they have the perception of control. I find this is true with my clients who speak realistically about their conditions with healthcare professionals. They may connect with Symptom Management nurses who prepare them, protect them and advocate for them, either at home or in hospital.

Care for the dying needs more imagination – and less hospitalisation. A review of Being Mortal by

Dr. Ezekiel Emanuel, an oncologist and one of the country's leading health care experts, says by age 75 he would opt out of medical treatments in order to not prolong his life in favor of letting nature take its course. Emmanuel joins Judy...

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