Moments That Matterby Susan Nemetz, October 2021
I was in Austin, Texas last week to commemorate my father’s 89th birthday. It would be a noteworthy milestone under any circumstances — but given the suffering so many have endured during the pandemic, it was a special joy to celebrate with him in person.
But there is more to this story. You see, my dad is in hospice. He was diagnosed with a rare heart condition that has resulted in profound heart failure.
And while it is absolutely heart-wrenching (pun intended), it has also been strangely joyful. Remarkably, my dad has been in hospice for 18 months, and he has had the most amazing care one could hope for when facing that phase of life. As my mother would surely have said, “Who knew?”… that someone could live in hospice for this long? We also didn’t know that Medicare covers most hospice care and approves six months at a time.
Dad lives with my sister, Ellen, and she takes such good care of him. She “rescued” him from his senior living center in early April 2020 as the pandemic was beginning to grip the country. Because of the COVID-19 restrictions, the senior center gave her just one hour to get him packed and moved. She used every minute, tossing those items she couldn’t carry over the patio railing, to ensure my dad had his essentials with him (which included his favorite gin).
Shortly after he moved in with Ellen, he was approved for hospice care. I wasn’t sure it was time yet, but the two of them talked about it with the healthcare team and my dad agreed that it was. Intervening with additional medical treatment was unlikely to make a difference in the length of his life and could very much reduce the quality of it.
To me, the concept of hospice for my dad was unsettling. If nothing else, it meant that the time we would have with him would be short, or not at all, with the pandemic continuing to rage. What none of us anticipated was that his quality of life, considering his illness, would be better than we could have hoped for. I now know and have learned through multiple resources that hospice is all about ensuring the patient has whatever they need to be comfortable, including medicines, oxygen, and needed medical support services. Many people begin hospice too late and don’t experience the benefits it can provide. Hospice also offers bereavement support for caregivers when that time comes.
I wanted to share this story while my dad is still alive to bring a positive and personal perspective to that part of patients’ lives. So many of the therapies we all work to develop and bring to market are for seriously ill patients. These medicines provide hope, but still, many may not survive.
Hospice, by contrast, is about “living your best end of life.” For the sake of patients and their family members who are facing this phase, we must know about that part too. There is hope, sadness, loss, and challenge in the lives of patients and those who love them, sometimes unexpectedly, as this next “moment” describes…
Two days after I returned from Austin, I had an early morning introductory call with a talented VP of program management for an early-stage oncology company. We knew of each other but had not met.
In our introductions, I learned that she had moved west to be with family, including her parents. Shortly after the move, her father was diagnosed with cancer and passed away soon thereafter. She spoke about how the meaning of her work in bringing cancer treatments to patients changed dramatically with that devasting loss. She had tears in her eyes, and I had tears in mine.
We spoke about grief and how incredibly unpredictable, powerful, and horrible it is. Losing a parent is so painful — and when you have experienced that loss and then talk to someone else who is going through it, the pain comes right back again. But I have also found that the desire to help relieve the other person from it, is even stronger. This woman lost her dad five months ago, and I know her journey of grief has just begun. Eighteen months since he began hospice, my dad is still living, albeit weakly, and I am grateful he has not suffered and has the best care imaginable. I think about this often as the days pass by.
The final interconnected “moment” in this trilogy happened later in the week when I participated in a health inequity forum hosted by Life Science Cares and led by John Maraganore, CEO of Alnylam. “Health equity means that everyone has a fair and just opportunity to live the healthiest life possible, no matter who we are, where we live, or how much money we make” (Robert Wood Johnson). The forum included several incredibly inspirational speakers who shared data about the vast differences in access to care as well as the social determinants of the disparity (i.e., poverty, education, housing). Their shared intent is to focus entrepreneurship on solving aspects of this challenge.
It is impossible for me not to connect the peaceful feelings I had — seeing the incredible care my dad was receiving in a comfortable home environment, and the serendipitous timing of the woman I met moving home just in time to spend precious moments with her father in his last months — with the impossibility of that type of attentive, supportive, holistic care being accessible to people who don’t have the resources (even though they are just as deserving). For this reason, I remain committed to Life Science Cares and applaud Alnylam for launching Alnylam Challengers in partnership with Acumen America.
So, how do we tie all of these things together? For me, it was important to see it, feel it, and learn about the care options people face at various times in their lives. I now have a positive and informed view of hospice care. I believe it is important to acknowledge grief and how devastating it can be.
Maybe, most of all, I am newly committed to seeing health inequities and doing something about them. If people don’t have access to healthcare, their life in poverty doesn’t provide the essential foundation to live healthily, or, more broadly, the therapies we are developing won’t get to them. What can we do to change that dynamic?
In short, when we talk about our commitment to patients in this industry, we need to see the human side beyond the one brief “moment” when the patient may be a candidate for our therapy.
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