Thursday, May 23, 2013

Dying well at home

hand massage:
complimentary therapy
There are many stakeholders in healthcare, and all need to work together. Unfortunately, like many families, they don't get any more functional when illness strikes. You need to work well with your healthcare providers BEFORE anything serious happens. You must deal openly and honestly with your healthcare team, including telling them about smoking and drinking habits.
The Ontario government has begun to reduce funding to hospitals and instead direct it towards home care. This is all well and good, with a guarantee in the new budget for no more than a 5-day wait for Home Care services. While 40% of us die in hospital, those of us who want to die at home need to think this through carefully. Much work and research is required. With recent cutbacks to hospital budgets, I think they are robbing Peter to pay Paul! Many find, too late, that they end up in an ER, and would have done better in a hospice setting, or with volunteer hospice support.
There are barriers to dying at home. First and foremost, are the inhibitions many professionals have about death and dying. (Read more here:

What can the patient do?
  1. Bring all medications with you for each appointment.
  2. Record all of your visits to healthcare professionals, keep a journal of these visits.
  3. Record all of your medications, and their dosages, place this in your wallet. The larger Ontario pharmacies prints this off with each dispense of medication. I tape it into my daytimer.
  4. Demand copies of tests, and take them with you to specialist appointments, (e.g., your 'normal' blood pressure). 
  5. Prepare a list of questions before your appointment. 

  6. Treat your physician or nurse practitioner with respect.
  7. Take a spouse, friend, family member to appointments. 
  8. Have them scribe test results, and record the answers to questions for you.
  9. Demand the truth from your healthcare team. Half the trick is knowing your prognosis, to the best of the practitioner's ability. 
  10. You need to know the predictable disease trajectory. You must know what you might expect, e.g., lack of mobility, pain, need for foot care, biopsychosocial issues you may face. This will give you the opportunity to prepare, determine what you want to avoid, e.g., feeding tubes, and what you want to embrace, e.g., appropriate pain medications, alternative therapies (meditation, yoga, reflexology, Reiki, massage therapy) when needed.
  11. Have you done Advance Care Planning? If you are in a coma, do you family members to keep this going? Do you want extreme measures, as in resuscitation? One UK study says, (Dying well at home: research evidence –PDF), "People's views were often ill-defined or poorly formed and frequently changed over time. Choices were often expressed as an inclination rather than categorical preference. People might change their minds to spare suffering of families, or because they had had respite care in a hospice and were minded to remain. In some cases, patients would not discuss issues as they had not accepted the prognosis."
  12. Can you afford to die at home? Emotionally, financially, physically (i.e., access for healthcare support), environmentally. 
  13. Can you ensure that your pain will be managed? Hospitals use CAD pumps to automatically administer medication. Some cancers are more painful than others, and require doctors to visit, when nurse's visits are restricted, or nurses prove less than adequate for your needs. Many face death in an ER, when they find family cannot cope and end up going to hospital without a bed.
  14. Can you create a room for palliation, away from the ebb and flow of other family members? 
  15. Do you have family members who can and will take time off of work? It is a huge emotional and financial burden for some, with one third of Canadians living pay cheque to pay cheque.
Keep your health information in a binder
[58.jpg]For my late father, I found a duotang, and asked visitors to sign in.
In the binder, list your medications, map out a caregiving plan, visit times of support staff or volunteers.
Have someone do coordination of services, with specialist services when you are no longer able to do so.
Make up a schedule for volunteer support.

    Ontario Proposes Investments in Home and Community Care

    Alternative Therapies in a day hospice
    An additional investment in the community care sector of $260 million in 2013-2014 would reduce wait times for patients. This would also help set a target for patients who require nursing services and those with complex needs to receive home care within five days of their Community Care Access Centre assessment.

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