In my last post I introduced you to Mrs K and explained how she found herself undergoing ‘rehab’ while she was nearing the end of her life.
Her experience is also provides another important lesson. In today’s health care environment, quality measures are prominent in shaping treatment decisions. ‘Place of death’ is becoming one such measure, with ‘home’ being the preferred place due to the belief that “the environment of acute care hospital wards is considered an inappropriate and undesirable place in which to die”. So from this point of view, Mrs K’s experience would be considered poor quality, because she died in the hospital rather than at home.
But it’s way more complicated than that.
Let’s look at the circumstances surrounding Mrs K’s death from various points of view.
Mrs K
Mrs K was tired, and done with life prolonging treatments. Her overarching goals were to be with her family and to be comfortable. While Mrs K told her family she wanted to “be home” and not in the hospital, she did not necessarily state outright that home is where she wanted to die.
A closer look at studies which purport to show that patients prefer to die at home (which helps inform the belief that dying in the hospital is suboptimal), actually shows this assertion to be weaker than implied. “Preferences for place of care are rarely clearly differentiated from place of death. When they are, preference for CARE at home is greater than for DEATH at home”(emphasis mine). Typically, the true priority for someone nearing the end of their life is to be comfortable, in a safe and caring environment. The actual place where this care is delivered is often less important.
Mrs K’s family made sure she had exactly that. Whether in the hospital or at the skilled nursing facility, they surrounded her with momentos from home (a favorite blanket, photos of family) and family members were at her side 24hrs/day. Her time at the skilled nursing facility working with physical and occupational therapy in an attempt at ‘rehab’ was not burdensome. Aside from the brief period of intensive treatments when she was emergently brought back to the hospital, she was comfortable until her death.
In addition, she knew that her care was not going to leave a huge financial burden on her family because it was covered by her insurance. The importance of this must not be discounted. How would you feel knowing the events surrounding your death left your family in financial ruin? This can be a great burden on a sick or dying person.
family of Mrs K
As noted above, a member of Mrs K’s large family was always at her side. Taking turns going to the hospital/skilled nursing facility, sleeping on chairs, or being up all night was not deemed a burden by any of them. And because Mrs K was always in a place where she was surrounded by skilled medical providers, they remained her family, without the added pressure of becoming medical caregivers.
They had a lot of love, but no medical expertise. They worried that if they were the primary caregivers, something would be missed and she would thereby suffer unnecessarily. Mrs K’s family knew that they had done everything for her. And this brought them great comfort after she died.
health care system
Aggressive, life prolonging treatments at end of life, particularly in someone that expressed a desire to shift to comfort care, does not reflect high value care. This is a huge problem due to the way our current system is organized and financed. We are all losers for this. The costs of ‘rehab’ services as well as her emergency return to the hospital and aggressive care for 24hrs, are far greater than what would have been if our system would have just provided adequate resources to help Mrs K remain comfortable and be allowed to die in peace.
was Mrs K’s experience a failure?
I propose that ‘failure’ would have been Mrs K dying with unwanted suffering, away from family, in an ICU- which is what almost happened to her. While she may not have been at home, aside from the return to the emergency room, Mrs K was surrounded by love, her symptoms were well managed, and she knew she didn’t bankrupt her family. Doesn’t sound like ‘failure’ to me.
Where the dying experience occurs is less important than the overall experience. Be it at home, in a skilled nursing facility, or in an acute care hospital, we need to ensure adequate funding so that each patient gets what is needed for that person to have the most humane dying experience as possible. For this to occur, we must validate (i.e., with sufficient healthcare $$) that caring for a dying patient and their family is a skilled need that requires more than the typical hospice benefit covers. Only then can we ensure that all patients who desire it, not just the ones with good insurance or financial means, can experience a more holistic dying experience than can be currently accessed.
Because the untold truth is that patients may be reluctant to shift away from aggressive/life-prolonging therapies towards comfort focused treatment solely due to financial concerns. A very sad and pointless catch 22.
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