Tuesday, April 9, 2013
by Suzana Makowski
By now, many of you may have heard or read Charles Ornstein,(@charlesornstein) a Pulitzer Prize-winning senior reporter, on NPR or in ProPublica on "How Mom’s Death Changed My Thinking About End-of-Life Care." He tells of his mother's final days in the hospital, after having aspirated during the placement of a naso-gastric tube that resulted in cardio-pulmonary arrest and subsequent days in the ICU. He speaks to the sense of being alone and the lack of guidance in the process of end-of-life decision-making. My heart dropped when hearing this story - for his (and his family's) loss, the difficulty of the process so clearly expressed, and for the haunting silence and void of palliative care throughout the care and in his stories.
During the interview with Jorge Valencia from The Story, Mr. Ornstein outlined his wish to have had "someone that was not involved in this case at all to come in and offer a perspective." He did not want his decision to be rushed. He expresses how his experience changed his view of end-of-life care - heightening his awareness of how the media and politicians have "allowed societal slogans to prevent us from having sophisticated conversations about end-of-life care" and as a result have left families without any sense of support.
Mr. Ornstein reached out to an author of the Dartmouth Atlas (a family physician and researcher), to other experts in neurology, and to literature on the web for guidance and reasurrance, but the story didn't mention working with a palliative medicine clinician. Perhaps he did not meet with a palliative medicine clinician because of lack of access, or perhaps because of the mis-perception of our field. Perhaps he, like many others, did not realize in addition to being experts on alleviating pain and suffering, on caring for patients who are living with long-term life-threatening illnesses like cancer and dementia, we also are experts in helping navigate difficult questions about prognosis, medical decision-making - and especially in situations like these - not merely the questions of "whether to get another round of chemo, or to keep someone alive by putting a feeding tube int heir stomach or a tracheostomy as they're progressing to their death." It is in the grey areas that the specialist is called in, when the decisions are not clear, when the discussion is harder.
There is a lot of discussion amongst the leaders and board members of AAHPM, HPNA, and NHPCO about the need to work with the media to make better known what our role can be, to change our public image. Indeed, we have our work cut out for us. We are taking steps to increase understanding of our specialty - we have a patient website, www.palliativedoctors.org, we created a youtube video speaking to situation Mr. Ornstein writes, we tweet ferociously, and even our board's President, Amy Abernathy is planning to speak at this year's TEDMED, but we have a lot more to do. If the President of the Board of the Association of Health Care Journalists, who has written extensively on the US healthcare system and end-of-life care, is unfamiliar with palliative care as a specialty in medicine, nursing, and social work that could have intervened and offered the unbiased guidance in medical decision-making, as well as helping support patient and family to address the trauma and grief of their experience, then surely others without his professional interest who face similar healthcare situations would not know to turn to us.
I agree with Mr. Ornstein: we need help from our politicians and from CMS leadership to recognize the both the work and value of having the conversation, as well as the expertise it takes when done well to assure families the guidance, support, and non-abandonment they deserve when facing the toughest of decisions - how to care for patients at the end of life, especially when it is unclear how near that end truly is.
I encourage us to take Mr. Ornstein up on his request to expand the dialogue with healthcare reporters about end-of-life care and to answer Mr. Valencia's question on how to "make this conversation more public and less lonely."
Lastly, I can't help but think how different his story might have been had palliative care been part of his mother's and family's care during those days in the ICU. We may not have changed the outcome or the weight of grief, but I am certain palliative care could have offered another perspective, to listen, to lend strength, and to assure the family would not have felt so alone.