Monday, December 15, 2014

Why do 70% of patients with chronic disease die in hospital?

It could be the best place for them.
It could be that caregivers cannot cope elsewhere.

According to Statistics Canada (2011)

  • hospital deaths account for 64.7% of patients
  • In Ontario 59.3% died in hospitals. 
A 2005 Ontario study of 214 home care recipients and their caregivers

  • showed 63% of patients and 88% of caregivers preferred a home death. 
  • 32% of patients and 23% of caregivers reported no preference for place of death.
We have a new study out by Health Quality Ontario. It tells us that only 30% of people with chronic diseases die receiving hospice or palliative care. They fearmonger, citing a desperate need for hospice beds. I totally disagree. Many of my clients are as determined to die at home as they can and eschew a hospice bed. Many of my clients are receiving care, it simply isn't labelled 'hospice' or palliati

ve care. Many go off on meds, and refuse treatment, despite angry family members.
This study showed that palliative care beds in hospitals cost between $630 and $770 per day.
Acute care beds cost more than $1,100 per day. We should blame doctors when patients with chronic diseases end up in acute care beds. Something has gone wrong there.

Almost all of my clients are getting excellent care at home, even if it isn't enough professional care.  For many of my clients, they do the work with their Charge Nurse to determine their needs, assess symptom management, devising a care plan. The province bemoans the fact that we only have 271 hospice beds in Ontario, yet Ontarians are unprepared to pay for more. We must make better use of home care staff to make strategies that work.

Determinants of Place of Death

  • EOL care in the place of residence 
  • time between referral to EOL care services and death 
  • type of underlying disease 
  • frequency of hospitalizations during the last year of life 
  • presence of an informal caregiver 
  • patient or family preference for place of death 
  • existence of advance directives 
  • nursing home and hospital bed availability 
  • the patient’s physical and psychological needs in the place of residence during the EOL period

Not all of my clients have been told, honestly, by their physicians about their life expectancy. 

This is why many end up in an ER, in a period when they are unable to access their Primary Healthcare Team. Where does it go wrong? when families reach a crisis and they find, in the dead of night, that unmanaged pain is an issues, or a new symptom appears, something happens for which they are unprepared. This means they then end up in hospital. That's the sum total of it all.

Many of my clients have excellent pain control. 

They have a pain kit in the home, ready just in case. Their Charge Nurse has explained what they can expect. She outlines the options for them: staying at home, or going to hospital, and/or finding a hospice room. She helps them with a Do Not Resuscitate order, if that is the family's wishes. She responds to the family, not just the patient, and ensures that the caregiver can manage the situation. There is nothing wrong with dying in a hospital, if that is the right placement. All factors must be taken into account. Many know what to expect in terms of their disease trajectory.

What I find often happens is that the family panics, and, with no other options, they must go into the ER to find treatments for symptoms, such as oxygen or a morphine pump (CADD) or morphine patch, when the patient is no longer able to take pills. This takes education, research, family counselling by the Charge Nurse, and families could even use a health coach or advocate.

My late mother's case demonstrates quite well where things go wrong and why so many die in an ER. My brother, the caregiver that night, panicked as they didn't have an idea of what to do for mom, and he took her into the ER. She spent hours there, and then they sent her home. She arrived home in the wee hours and died at 9:00 in the morning.

What do we need to do for families?

  • Education for all stakeholders
    Stakeholders in healthcare
  • Better trained professionals who are HONEST with families
  • make the individual stakeholders work better with the resources on hand.
  • Palliative Nurse Practitioners who will make house calls (since doctors don't seem able)
  • Better tax relief and financial support for those who choose to be caregivers
  • Trained doulas, or death coaches, who will be advocates for families if nurses are unavailable
  • Consistent funding for hospice volunteer programs and day hospice groups
  • Better, more honest discussions as end-of-life approaches
What I don't think we need are people like those in the media who fearmonger about Baby Boomers and needing beds. Since 63% of patients want a home death, ensure that the above needs are met. We are living longer and better. These doom and gloom predictions simply fearmonger.
End-of-Life Health Care in Ontario

"In July 2013, the Evidence Development and Standards (EDS) branch of Health Quality Ontario (HQO) began work on developing an evidentiary framework for end of life care. The focus was on adults with advanced disease who are not expected to recover from their condition. "

About Health Quality Ontario

Health Quality Ontario is an arms-length agency of the Ontario government. It is a partner and leader in transforming Ontario’s health care system so that it can deliver a better experience of care, better outcomes for Ontarians, and better value for money.
Shirlee Sharkey, co-chair of HQO’s end-of-life expert panel, said these issues are becoming starker as baby boomers get older. By 2036, the number of Ontarians over 65 is expect to double to 4 million, representing roughly one quarter of the population, according to the attorney general.

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