The Broken System of Hospice

The lack of recognition and emphasis on extending life at all costs reflects a broken system.

“It’s time to put him in hospice,” said the geriatric case manager we had hired, after months of long-term care debacles and trying to navigate the Medicare/Medicaid system by ourselves.

She recognized the dying process before anyone in the medical system would.

When my father had a stroke and dealt with its aftermath – end-stage vascular dementia – my family struggled with the difficulties in transitioning from health care to end-of-life care.

This system affected my family in a way that challenged us emotionally and exhausted our resources. And it is affecting millions of others as well.

America is not prepared for death.

There are several reasons why the United States is not prepared for our aging citizens to die. For example, there is the Medicare system and medical establishment that prescribes hospice as a last resort rather than a necessary rite of passage for so many.

Additionally, our citizens are increasingly dying of chronic diseases or “aging into death.” This pressures our medical system to understand better and address the dying process.

How we pay for aging into death is another important factor, with many giving up everything financially to get the long-term care they need. This is because there is a period between aging-related illnesses and the active dying process, which is not addressed adequately by private insurance or Medicare.

Women take on much of the burden.

When my father had a stroke, my sister and I had to deal with the end of life decisions. I started to think, was our situation unique?

I talked to a few other friends, and I realized it is often women in particular who deal with the ramifications of the aging and failing health of parents.

Women are culturally expected to be caretakers, which puts much pressure on us to care for our aging parents. Many women end up taking on the responsibility of caring for their chronically ill or dying parents just as their children are leaving home. They go from one form of caretaking to another without a break.

Women in their 30s and 40s, in particular, see their parents start to age into death like no other generation before. This is because more and more individuals have chronic conditions that extend their life, but end-of-life decisions still need to be made. People struggle with healthcare decisions while considering financial plans, long-term care options, or when to choose hospice.

I believe this issue of end-of-life care is relevant to women (and men) of this and the next generation of adult children because our citizens are dying more and more of chronic diseases, or, as I said, essentially aging into death. There are many financial and emotional challenges these adult children have to consider, especially if parents can no longer make decisions for themselves.

This is a life-and-death matter.

My family wasn’t prepared for my father’s sudden decline. We are not alone. Perhaps it was because the Baby Boomers were a generation that believed they would live forever and that entitlements like Social Security and Medicare would adequately support them in old age.

The primary lesson I learned is you can’t depend on these entitlements, and you have to assume you will age into death. Preparing for the end of life circumstances shouldn’t be left until the very end.

But it’s not just about the personal choices we make. There are structural problems in how our medical system approaches end-of-life care. Perhaps, it is because a healthcare model prioritizes extending life over quality of life. Our doctors and nurses get very little training in managing the end of life.

How does hospice fit into this?

One of the complaints I’ve heard from others with parents nearing their end of life is that there is an abrupt transition between the stage of managing a chronic illness (and any resulting health crisis that results from these illnesses) and the active phase of dying.

Hospice is supposed to fill the gap between the two stages. However, structurally, for hospice to be paid for by Medicare, all treatment of any chronic illness must cease, even if the person isn’t dying immediately from that illness.

For example, someone in the end-stage of cancer with diabetes would have to stop taking insulin. The reasoning is that this is life-extending management of a chronic illness at a time when there should be no more attempts to extend life. This is because Medicare will only pay for hospice when someone is diagnosed to have six months or less to live.

Our senior care manager told us that some people stay in hospice for years. She said she had one client who was on it for seven years. My suspicion in many of those cases is that hospice was used as a last resort for long-term care management. It’s not until you are dying that Medicare will step in and provide adequate care-taking for those aging into death.

The struggle is real.

The fact is, most Americans can’t afford to care for their parents in the last years of aging into death and also care for themselves. We assume we will have assistance from social services, insurance, or our entitlements, but even in the best-case scenario, these resources are limited.

I’m not sure what the answer is. But we need a radical paradigm shift in thinking about life and death to find solutions. Until then, the structural problems with our healthcare system and entitlements will continue to fail our families in times of their most need.