Stand by Me: A Guide to Navigating Modern, Meaningful Caregiving
by Allison Applebaum
Allison J. Applebaum, PhD, is a clinical psychologist specializing in psycho-oncology, the field devoted to supporting the mental health of all individuals affected by cancer. She is an associate attending psychologist in the Department of Psychiatry and Behavioral Sciences at Memorial Sloan Kettering Cancer Center (MSK) and an associate professor of psychology in psychiatry at Weill Cornell Medicine in New York City. Dr. Applebaum is the founding director of the Caregivers Clinic at MSK. The Caregivers Clinic is the first of its kind and provides targeted psychosocial support to caregivers—family members and friends—of patients receiving cancer care at MSK.
Excerpt
Care Is Not One-Size-Fits-All
Discussions about advance care planning are often among the most important—and most difficult—you will have as caregivers, and you are uniquely positioned to guide them. Caregivers frequently have a more accurate understanding of patients’ prognosis than patients themselves and are increasingly relied on to manage a range of demanding responsibilities in decision-making. Optimal outcomes, including your ability to carry out your loved one’s goals of care, therefore, may hinge on your ability to initiate and navigate these complex yet necessary discussions. These discussions impact not only the care your loved one receives and their quality of life but your experience during caregiving and beyond as well. In this chapter, I provide an overview of the main facets of advance care planning and specific skills and tools that you can use to facilitate these discussions with your care partner and members of the healthcare team. Although challenging, these conversations are important op- portunities to connect more deeply with your loved one and when engaged with courage and vulnerability, can allow you to feel more in control of your caregiving journey.
From the very first hospitalization until my dad’s last weeks of life, I was asked by medical professionals at all ranks of the hospital hierarchy about his goals of care. Goals of care include the goals patients have for the care they are currently receiving, as well as care they will receive in the near future and over the long term. Goals of care include what patients value in terms of their desire to receive care that can save or extend their lives, as well as care that is focused primarily on preserving their quality of life, however long that may be. These goals of care inform treatment choices, such as patients being willing to receive cardiopulmonary resuscitation (CPR) if a cardiac arrest were to occur, or for patients with cancer, receiving chemotherapy that would lead to some chance of a cure but that could come with a high side effect profile, versus care that is palliative and focused primarily on addressing symptoms and quality of life. Importantly, goals of care are not static. Instead, in most cases, they shift over the course of an illness trajectory and more broadly, one’s life.
I repeat: goals of care are not static.
My dad and I spoke openly and repeatedly about treatment goals throughout our time as partners in care, and I made a commitment to carrying those out until he took his last breath. My dad’s goals of care had emerged from the repeated discussions we had about advance care planning. Advance care planning is an umbrella term for the process of thinking ahead to goals of care, treatment choices, and choosing a healthcare proxy to speak for oneself at a point in the future. Advance care planning includes the completion of advanced directives, legal documents that outline our goals of care and how— ideally—we would like them to be carried out.
My first conversation with my dad about advance care planning occurred on the drive to school in October 1999. I was seventeen; my dad was seventy-seven. My maternal grandmother had just died, and we had returned the day before from her funeral in Pittsburgh. I asked him about the customs I had just witnessed, and eventually got the courage to ask him if that’s how he envisioned his funeral, and if he had any thoughts on how he would like to die. “In my sleep,” he said. “And a pine box is fine, just make sure you find the least expensive one. It’s just going to disintegrate.” Always concerned about finances, he then turned the conversation to the extraordinary racket that is the business side of dying.
Eleven years later he and I broached the topic again when he was being discharged after a hospitalization for a cellulitis infection. This was shortly after I finished graduate school and moved back to New York. I asked what his goals were at that time, and if he got sick again, if he would want to go back to the hospital and receive the type of lifesaving care that he just had. He answered in the affirmative but felt strongly that he wouldn’t want to be kept alive by machines. Nonetheless, these answers were accompanied by qualifications. “I’m not ready to go; there is life to be lived,” he said.
We revisited these topics when I formally became my dad’s healthcare proxy after my mom’s death in 2014. He once again shared that he was not ready to die and would want to be taken to the hospital if he got sick. He also chose not to sign a Do-Not- Resuscitate (DNR) order. He and I had spoken at length about the meaning of this form—not just what was stated on the paper but also the implications of signing on the care and attention he might receive in the hospital. We spoke about how, during the prior fifteen months in which he had eight hospitalizations and seven stays in nursing facilities and spent one month in a coma, had he signed a DNR order, it was unlikely that he would be sitting with me having that discussion. He understood that the actions of the medical team were dictated in many ways by DNR status, and he wondered if, for example, on the occasions when he appeared to be becoming septic because of urinary tract infections, he would have received the same urgent care in the hospital had he signed the DNR order. Importantly, we discussed how this was a conversation and a decision he could return to, and I knew that he would make his wishes clear to me if they changed.
Excerpted from Stand By Me: A Guide to Navigating Modern, Meaningful Caregiving. Copyright © 2024, Applebaum, Allison. Reproduced by permission of Simon Element, an imprint of Simon & Schuster. All rights reserved.