Wednesday, May 1, 2013

Half of terminal cancer patients die in hospital - isn't that the best place for family?

What a ridiculous headline:

Study: Half of terminal cancer patients die in hospital; would rather be at home

A new study shows almost half of terminally ill cancer patients die in hospital...Study: Half of terminal cancer patients die in hospital; would rather be at home

For anyone, like me, who works with those who a sick and at home, who support their families in these times of crisis, they will understand how difficult it is emotionally, physically and financially, to care for a palliative patient at home. As much as the patient wants to die at home, they are better served by professionals who understand what to do, how to do it and when to do it.

Family may not be able to cope, despite the wish of a patient to die at home. It has to be a family decision, and when the patient is no longer able to make good decisions, if s/he is unsafe at home, if pain cannot be managed, if s/he cannot change the adult brief, then a decision must be made.
We should have the right to place our dying loved ones in the safest place for both them and for use, the caregivers.

A professional writesOne thing we all agree on: if you have a diagnosis of a life-threatening illness (or even if you haven't) talk to your physician and close family about what level of care is realistic, should you become seriously ill. 

In hospital, you have professionals to provide crucial end-of-life care. Many doctors, my late parents' included, do not make house calls, nor do they declare a patient palliative, and let us know the disease trajectory.
"Her doctor and nurses kept telling us our mother was palliative but managing well at home."
A visit to the home proves differently.

There are barriers to dying a good death at home:

  • lack of staff: doctors, nurses, PSWs 
  • inability to manage for social, emotional, physical care
  • family who live far away
  • doctors who do not make house calls
  • unmanaged pain
  • burned out family who do not understand protocols
  • patients who will not admit to pain or refuse pain medications = agony for family members
  • doctors who will not make a palliative diagnosis.
  • "In Ontario CCAC seems to be a huge problem. My mother does not want to die in hospital but getting any kind of service from CCAC is like pulling teeth."

What does that quality palliative care look like?

  • Access to pain medications 
  • Doctors on call
  • Personal support workers to change bedding and adult briefs
  • Nurses to turn the patient every two hours
  • Mouth care, as patients can be mouth breathing,
  • an understanding that a patient is in good hands
  • respite for caregivers who may be burned out.

Death with dignity - yes, it is possible
Dying in a hospice is an excellent option, but limited in Ontario.

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