Years ago, at a gathering of writers, someone told me I should look into hospice services for my mom. I was rather offended. Apart from her dementia, my mom was pretty healthy and I expected her to live for a long time. But I confess that back then I knew very little about the different models of treatment families can offer their loved ones at any stage of the disease.
The topic came to mind again this week when I came across a research brief on palliative care, which incorporates many ideas used by hospice providers. The article in European Journal of Public Health Advances by Lieve Van den Block — an award-winning research psychologist — suggests that since there is no real cure for Alzheimer’s or dementia, “curative” care alone may not really meet the complex needs of elderly patients. Her work, published by Oxford University Press, doesn’t suggest that we abandon the idea of seeking a cure for dementia. What it asks is that we re-focus our attention to include the range of physical, social, and psychological problems an older person faces — then plan care options so they can choose what makes them most comfortable in the final years of their lives.
Van den Block explains that the term “palliative care” used to refer to mainly to cancer and end of life situations. Now the idea is broadening to include support for patients with all types of life threatening diseases. It is an approach that encompasses the “physical, psychosocial and spiritual problems” that can affect the quality of life of the patient and their family.
At first it may seem that, given all our duties, this question is too complex for us to consider. But as my mother’s state becomes ever more precarious, I ask myself if we took enough time to discuss everything with her so her care would address deeper needs that lie below the surface checklist of her living will.
Hospice is still a scary word for me. It sounds like the end of the road. But the palliative care model uses many of the same ideas without making any judgement about how long the patient is likely to live. It is a patient-centered approach that focuses on quality of life and dignity, patient autonomy, and compassionate care. My goal now is to learn more about what that would mean in a real life family setting.