by Saskia Siderow, Managing Director, Ormond House LLC
Five years ago, my larger-than-life mother-in-law – we’ll call her S here – was diagnosed with colon cancer. It had metastasized to her brain and her liver and the prognosis was poor. On a cold Monday morning in December, one of S’s specialists broke the news to her husband, N, and a few hours later in a hospital waiting room, N suffered a massive stroke.
The next several weeks and months passed in a blur of life-or-death decisions that none of us were equipped to make. Both N and S had medical teams that consisted of half a dozen specialists at the top of their field, but no one was in charge. There was a great deal of activity – testing, surgeries, therapies – but very little open communication about prognosis, goals of care or quality of life. My husband and I became S and N’s advocates, experiencing firsthand the fragmentation of the US healthcare system and the effect it can have on patients and families.
Three months after her diagnosis, S died. N survived, but he was seriously debilitated and required 24-hour care.
In the last few weeks of S’s life, I learned about palliative care from a friend and we requested a consultation. Palliative care is specialized medical care for people living with serious illness. It changed everything. S finally had clinicians that asked about what mattered to her and what mattered to us as a family. The circus of unnecessary and burdensome tests ended, her care became more coordinated and her pain crises were addressed. Palliative care supported S’s wish to try experimental chemotherapy, but when she acquired yet another infection, palliative care granted her comfort in her final days to say her farewells.
We cared for N until his death in 2015, four years to the day after the stroke. Having learned the lessons of palliative care, we were determined to ensure his care was always in line with what knew of his values, focusing only on treatments and therapies that would improve his quality of life. This included the very simplest parts of helping N live his life the way he wanted – putting on his favorite Frank Sinatra playlist and serving a Ketel One martini (very cold, very dry, one olive). It also called for some tough decisions – like ending rehabilitation therapy that was no longer helping him recover function.
Nothing can prepare you for what we lived through as a family, but when we learned about palliative care, we felt like we had learned healthcare’s secret handshake. We will be forever grateful to the extraordinary clinicians and therapists who worked with our family to give S and N their dignity, and us our sanity.
So what now? In my career as a financial journalist in the years preceding S’s death, I was always most excited by the stories at the intersection of real world problems, complex financial incentives and policy – stories that exposed systemic flaws affecting people’s lives. I have grown equally passionate about using my communication and analytical skills to contribute to changes in the way healthcare policy addresses the needs of our most vulnerable patients. I have heard countless tales of patients and families with excellent and dedicated doctors, who were nevertheless let down by the system – through poor coordination of care, overly aggressive treatment, or the maze of insurance coverage. People who did not know to ask for palliative care.
Over the last five years, I have contributed my time, skills and resources to palliative care experts who are trying to change the face of healthcare. I have invested in the pursuit of a professional degree in healthcare policy analysis to gain the tools I need. I have talked about the secret handshake to anyone who will listen. Ormond House is the culmination of these efforts – a research and communications business focused on supporting efforts for high quality patient-centered care for patients and families living with serious illness. I hope you’ll follow me on this journey.
One thought on “Palliative care: the secret handshake we all need to know”
Very moving story and important work. Many many seniors get caught up in the end of life care treadmill of tests, surgery, rehab etc. and what’s actually important to them becomes a secondary concern. Heartfelt thanks for your efforts to change the conversation and quality of life – and yes death – for so many.