Kami Norland, Community Specialist
It is easy to get wrapped up in the day-to-day doldrums of life even if you are leading a “mission-driven” life of working for a non-profit health care organization. One can easily become consumed with tasks and deadlines and forget about how each of these daily, “up-stream” tasks contributes towards making a positive impact on the world; after all, it’s only natural to follow Newton’s first law of motion which states: Every object in a state of uniform motion tends to remain in that state of motion unless an external force is applied to it.
Recently I was preoccupied with Newton’s first law until an external force jarred my uniform motion into a new awareness. This external force was a lesson I learned through The Center’s contract with the Department of Veterans Administration (VA) where we partnered with five community hospice organizations to focus on improving care coordination for rural Veterans requiring end-of-life care. I observed how these hospice providers work diligently to assess each patient as an individual and deliver high quality, customized care where treatment is designed to relieve symptoms and provide comfort and support to individuals with life-limiting illnesses. In my opinion, the concept of hospice care is valuable because it leads the American health care system in providing holistic care where individuals are treated as complex, multi-dimensional creatures that require support and dependence in all aspects of living, not just physical, but mental, social and spiritual as well.
As I listened to these hospice providers share their stories of facing mortality daily, I felt their compassion and their wisdom for what it means to truly embrace life and the value of relationship building. They spoke of their patients with genuine care as they described how they stop their Newton’s law of motion to simply listen and accommodate to their patients’ needs. They acknowledged that there is so much they can do for people at the end-of-life: pain relief, support for emotional, social and spiritual care and that hope does not have to be lost when looking at options such as hospice and end-of-life care. Each of the community hospices also described how they embrace the philosophy to live life to the fullest—even until death.
Despite this philosophy sounding so cliché; I find solace in this perspective because it enables me to establish a well thought out plan of how I want to perish, where, with whom and under what circumstances I am presented with reaching this stage of life. I know myself best and know how I want to be cared for. Noting how there are discrepancies in how my family members perceive mortality, I want to be able to eliminate potential disagreements, distress and financial strain on my loved ones when it is my time to go; so even though I am relatively young, safe, and healthy, I want to document an advanced care plan so I can be assured that my desires for living life to the fullest even until death will be met by my care team.
“Advanced care planning, if done at the right time, and done well, helps prevent unnecessary suffering at end-of-life” explained one hospice provider. As a society, I think we need to recognize that at the two poles of life—when we’re born and when we die—we have to be fully dependent on others. We don’t consider the absolute dependence and vulnerability, even incontinence, of infants and toddlers as anything abnormal or undignified because we’re physically dependent on others, so why do we as a culture view this differently towards our exit in life? At both poles of life, caring for another is what we do; it’s part of our very humanity and hospice providers can offer this type of humanity more effectively if this service is offered locally and a plan has been discussed.
Receiving hospice services is rare for several reasons. Foremost, it’s because we live in a culture of advanced medicine where physicians are trained to provide every intervention possible to treat or cure - and most often, up until death. There appears to be a common perception that if the physician, the patient, and the family can’t do “everything possible to treat”, then they have failed—the illness or injury won. The result of this action is that the patient will sometimes endure ongoing, painful and expensive treatments because it is admittedly extremely difficult to “let go”. Then in the end, the patient and the family has little or no time to process or prepare for this important transition in life and the family is left with exorbitant medical bills and a sense of loss and defeat. Hospice services may also not be formally offered in hospitals because it is not historically considered a profitable service. However, on the contrary, hospice services can provide financial benefit to a hospital as it eliminates the number of emergency room visits and costly medical treatments. Research indicates that the last six months of an individual’s life are the most expensive if traditional medical treatments focused on curing, rather than providing comfort are administered.
I can imagine that most of you are now thinking “what a morbid thought” and may feel uncomfortable approaching this taboo subject of death. I get it, I come from a stoic Norwegian family and even broaching a blog about this topic is reminiscent of the awkward conversations driven by parents about teenage sex, and akin to that conversation, I, like my parents felt then, feel now that this is a life lesson that if we prepare ourselves for this stage in our lives, we could prevent unneeded suffering, reduce the burden on our families, all the while having our needs met. So, I encourage you to create that external force in your uniform motion and consider an advance care planning conversation for yourself, for your loved ones; for this is not a conversation about death, rather a conversation about living and how you choose to live your life up until death.
To aid in this discussion and for more information, reference the video and discussion guide at http://www.considertheconversation.org.
