End-Of-Life Care – Are We Doing Right By Our Patients?
1 School of Medicine, Saint Louis University, St. Louis, MO
2 Hospice & Palliative Care Division, Scripps Memorial Hospital Encinitas, Encinitas, CA
Throughout my third-year clinical rotations, I learned so much about the different treatment modalities that we can provide for our patients and what we can do to extend our patients’ lives. However, in many instances, I struggled to answer the question, “how do we work with patients with limited life expectancy?”
Although we are taught how to treat our patients medically, I found that our approach to working with end-of-life patients who do not require any further treatment was lacking. It was not until my final rotation in family medicine that I witnessed the true impact of shifting the goals of a patient’s care in order to preserve a patient’s end-of-life wishes.
Mr. Jones was a 68 year-old man who reluctantly came to our family medicine office because “he needed to have a PCP follow up.” He was recently diagnosed with stage IV lung cancer and signed out of the hospital “against medical advice.” He had been hospitalized for the past 21 days working with various hospital medical teams about how to extend his life. They talked extensively about “a new treatment that could provide a 50% chance of survival for potentially another two years of life.”
However, Mr. Jones felt that the providers “didn’t do anything for [him] over the past few weeks” and he eventually decided that he no longer wanted to stay in the hospital. He was not informed about the direction the hospital teams were taking regarding his care. He thought that he would be more comfortable staying at home with his family.
Mr. Jones was, understandably, hesitant to accept our care given his recent experience in the hospital. When Mr. Jones arrived, my family medicine preceptor decided to take a different approach. Instead of talking to the patient about what we could do to save his life medically, we discussed what we could do to make him more comfortable. We asked him the simple questions, “What do you need at home to be comfortable? What can we do to help make your final time as easy as possible?”
Mr. Jones seemed surprised by this approach as he noticed a stark difference in his treatment compared to his recent hospital admission. His stubborn face quickly turned into a smile as he laughed and talked about what he would like to accomplish with the limited time he had left. He was grateful for our time and thanked us as he left the office with his wife.
Just one week later, his wife called to inform us that the patient had died. He had finally been able to rest knowing that a provider was honest with him about the realities of his condition. He was content to have found a provider who was realistic about his chances of survival and who did not get caught up in the statistics behind life-saving treatment modalities. He was finally able to rest comfortably and come to terms with accepting his disease.
From Mr. Jones’ story, I learned that it may be beneficial to consider hospice in patients sooner rather than later, especially when their quality of life will be drastically decreased through medical attempts to extend their life.1
People are infinitesimally unique, with their own circumstances, experiences, beliefs, hopes, and fears that dictate how they make decisions and live their lives. With Mr. Jones, we saw a patient who did not understand why he had to stay in the hospital and who felt that he was undergoing unnecessary treatments. We saw that the quality that he valued most was whether he felt that his provider had listened to him. At the end of their lives, many patients will desire plans that acknowledge and prioritize the aspects of life that they value most. Unfortunately, Mr. Jones felt that his hospital team did not accomplish that.
Furthermore, Mr. Jones’ story provides some key takeaways for the hospital medicine community. As we saw, hospitalists are responsible for taking care of patients who, more often than not, carry chronic, deadly conditions that make them prime candidates for end-of-life care discussions. Being in this position means that hospitalists carry a great deal of responsibility in determining which patients will need these conversations.2
Hospitalists can approach these end-of-life care discussions through a variety of approaches. As outlined by the Society of Hospital Medicine, “hospitalists should be able to: (1) determine effective management strategies for patients requiring palliative care (2) formulate specific patient-centered palliative care plans (3) conduct meetings with patients and families to establish goals of care that reflect the patient’s wishes (4) communicate effectively with patients and families about hospice and know how to refer a patient to hospice and palliative care.”3
Moreover, Wright et al. suggest that there is an association between earlier end-of-life care discussions and a better patient quality of life near death. Interestingly, this better patient quality of life was also associated with a better quality of life among surviving caregivers. Conversely, patients who did not receive end-of-life care discussions experienced significantly more aggressive medical care, a worse patient quality of life near death, and a worse quality of life among surviving caregivers.4
Thus, as a medical student interested in hospital medicine, I have learned about the importance of taking time to fully understand my patients’ values; doing so can often help with initiating difficult discussions such as end-of-life care. I have also seen how a patient’s desires for end-of-life care may be drastically different from what is recommended medically, and how important it is for us, as hospitalists, to interpret those values so we can do justice by our patients.
I would like to give a special thanks to Dr. Alan Chiu, Hospice & Palliative Care Medicine Physician, for his guidance and assistance with this article.
References:
1. Gawande, Atul. Being Mortal: Medicine and What Matters in the End. New York: Metropolitan Books, Henry Holt and Company, 2014.
2. Fail, R. E., & Meier, D. E. (2018). Improving quality of care for seriously ill patients: Opportunities for hospitalists. Journal of Hospital Medicine, 13(3), 194–197.
3. Palliative care. Journal of Hospital Medicine. 2006;1:80-81.
4. Wright, A. A., Zhang, B., Ray, A., Mack, J. W., Trice, E., Balboni, T., … Prigerson, H. G. (2008). Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA - Journal of the American Medical Association, 300(14), 1665–1673.
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