Monday, May 13, 2013

Where do you want to die?

It was an interesting phone-in show (see below). I was the second caller.
I explained that Mom died at home; Dad, 9 months later in long-term care.

Neither was ideal. What is ideal, is to die in a hospice building. The government doesn't pay for them. Once a hospice building has been established, they will help with funding, but locals have to fundraise enough money for buildings, retrofitting, sustainability and this takes a lot of money.

This is why there are only 65 hospices in Canada, with 29 in Ontario. I visited Heart of Hastings Hospice last year. We also have May Court in Ontario, and I visited the one in Bancroft, but there are many communities where hospice fundraising has gone on for 10 or more years, with big chunks of money sitting a bank waiting for sustainability.

This is why only 60% of those with cancer die at home: for most of us, it is the easiest place to ensure quality care and to access a homey atmosphere, but it can be difficult to keep patients clean and pain-free.

For some, it is selfish to want to die at home. Adult daughters and spouses carry the burden. Not all are able to manage to help a loved one have a good death. Not all can afford it. Not all are emotionally or physically prepared for it.

Dying With Dignity

Primary Care Staff traditionally is reluctant to make a palliative diagnosis. In many cases they do not know 'how long' a patient has. There are many barriers to death with dignity. I have come across people who have taken off the 6 months work, only to have the patient survive longer. For those who are unaware of the prognosis, it can be a difficult time. I have found that my clients with money and education to advocate, have a more dignified death. There are many, also, who eschew death with dignity in order to stay at home. This has a huge impact on the quality of their dying. It also has an impact on family members.

Quality of the last days or hours: Disease Trajectory

Mom was adamant, despite that, the day before she died my brother took her into the ER, after the doctor asked if she wanted to die at home. It was a needless visit, as many are, with them getting home in the wee hours, only to have her die at 9 in the morning.
 Dad had dementia. He didn't understand what was going on. He was in a coma for the last three days. I fought for 3 months to get him better pain management.

Palliative Protocols

Patients need mouth care. They need to be turned every couple of hours. They need sips of water and minimal food. Not all caregivers know this, few healthcare staff communicate this. Families may not be able to afford to provide extras that keep a patient comfortable.

Incontinence & Mobility

Neither was able to use the toilet. Both wore adult briefs. The last thing I did for my mother was to put on a clean brief. Dad needed a lift to get him out of bed. Can you lift your family member?

Pain Management

Mom's pain wasn't managed, she didn't bother having her morphine prescription filled when she left hospital.
Dad's pain wasn't managed, as none of the healthcare professional believed he was in pain until the very end. I complained to the Ontario College of Physicians and Surgeons.
They also need to keep a diary, to better understand the disease trajectory. There are many tools that will help, such a the Palliative Performance Scale test. Family members may have to fight staff, despite knowing their loved one is in pain.

Dying in hospital Ontario Today

Most people don't want to die in a hospital. But new research shows that's where 40% of terminal cancer patients in Ontario end up dying.   
Yesterday's guest on@CBCOntarioToday was @CanadianHPCAssn's Executive Director Sharon Baxter
Links suggested by CBCO's guest: 

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