The Palliative Caregiver

I never realized the true meaning of palliative care amidst the harried practice of emergency medicine. The pressure being placed on me to do more often becomes the same expectation I place on patients to receive more treatment. Gloria, the wife of my patient with terminal mesothelioma shed a light on palliative care for me with the insightful words, “We know that there is no cure – we just want to even things out and buy a little more time for Andy.” This was a reasonable directive – take a breath, ease the situation, create a smooth transition and offer some peace of mind. The art of palliative medicine is the spiritual practice of balancing yin and yang with time and money.

While receiving palliative care, patients must determine how time and money will be spent. Andy was thankful for having earned great healthcare benefits from many years of hard work, but was well-aware that more time in the hospital would require additional co-pays and eventually deplete his nest egg. He wished to even things out regarding Gloria’s financial security and valued that time was of the essence – time at home weighed against staying in the hospital. Palliative care emphasizes shared decision making, balancing physicians’ recommendations with patients’ preferences. The palliative caregiver is mindful that harmony exists when free choice is given without condemnation, evenly advocating for the yang assertion of self-determination alongside the yin acceptance of appropriate care.

Patients receiving palliative care are often caught between a rock and a hard place of doing everything or dying. The natural inclination of “Good Samaritans” is to offer patients more, potentially improving quality of life through medical intervention – a proactive yang approach. Free choice includes the passive yin offering nudged by a “Devil’s Advocate,” reassuring patients that there is another away to attain fulfillment. The gifts of letting go and allowing free choice support the profound exclamation, THERE IS NOTHING WRONG WITH DYING AND THOSE DYING ARE NOT WRONG. This compassionate and collective proclamation allows each of us the mercy to abide peacefully in the final destiny of our humanity.

Gloria’s plea to “even things out” became a personal call to action and physician responsibility to evolve as a palliative caregiver in my practice of emergency medicine. I now offer patients more while erring on the side of doing less and avert more physician imposition while lessening patient obligation. Patients deserve the freedom to choose between receiving medical intervention in the hospital and having nursing support at home. Similar to the distinct boundaries between yin and yang, the healthcare system needs to “even things out” between promoting palliative care as a medical specialty and defining it as a humanitarian resource.

Shining a light on November being both National Family Caregivers Month and National Hospice and Palliative Care Month might just create a cozy relationship between the two. The palliative caregiver shines a balanced and soft compassionate light on the personal empowerment to live or die. In being called to complete life’s journey, patients receiving palliative care may recognize that there is a light shining on and emanating from them in regards to being considered chosen. This light becomes greater when choice, certainty and mercy become ignited. Advance care planning might do well to focus less on personal end-of-life care and more on profound palliative care. The even-handedness of the palliative caregiver leads to the heart-centric illumination of the loved one’s life-threatening medical condition as a life-transforming spiritual undertaking.