Thursday, January 10, 2013

Barriers to having a good death

Socioeconomics, education, experience, leads to issues with caregiving, choices, assistive devices, and transportation.
The impact of the Freedom of Information Protection and Privacy Act (FIPPA) vs. the Personal Health Information Protection Act (PHIPA) is huge.
Professionals confuse privacy and personal choices.
Truthfully, PHIPA over rides FIPPA. How can a healthcare worker send someone home, to a space where their basic needs will not be met? For someone dying to be sent to be cared for by family members unable to cope, is a huge mistake. Their safety and well-being is compromised.

If you live in poverty, you are at-risk from the attitudes and behavours of those around you. If you are surrounded by those who treat you with negative attitudes and disrespect, it makes the final journey very difficult.
This WW II vet died in LTC, in a for-profit retirement home,
without adequate support. The home told family
they could manage his needs. I sat 5 hours with him,
as he experienced Cheynes Stokes breathing.
He was starving, on pureed foods and no liquid supplement,
being given meds by PSWs with no nurse or doctor darkening his door.
I  contacted the family telling them he had pneumonia,
finally the doctor was called in.

We look at those participating in end-of-life care:
  •  family physician, nurses, PSW, volunteers, and family members.
From top down, there are those who do not treat residents and clients well. For the most part it is ignorance, not stupidity.

Those living in poverty or on disability face many issues.
Partly, it is giving in to physician's wishes, without making informed decisions about what is best for the care recipient and the family.

It took neighbours to intervene for this man.
He was addicted to his pain meds, and alcohol,
enabled by attending health care workers (nurses, PSWs,
physiotherapist) to live in this filth, including excrement.
He met us at the door, delivering Meals on Wheels,
wearing nothing but a sweatshirt.
The working poor, those who must go into work, face stress worrying about loved ones at home, in hospital or in long-term care. Caregivers, usually wives and daughters, often daughters-in-law rather than sons, face much stress and risk of getting ill themselves.

Simple supports: assistive devices, hygiene, access to simple things like laundry, liquid diet supplements, or assistance with ADLs, may or may not be available to the poor, and they are not available to the working poor.

The Solutions

  • PSW regulation and better training
  • Upgrading for all professionals who work with palliative patients.
  • Patient advocates
  • Supportive living placements
  • A refusal to accept that people should be allowed to die at home in poverty and filth with Home Care that will not support their needs. These people are entitled to hospital care and a hospital bed.
This is what I said, during a TVO interview last year.

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