Every heartbeat is precious. Each beat encompasses a fleeting moment of unrelenting life and beauty, so delicate and natural that they may pass us by without a moment’s notice. They drift away unseen.
But for those of us who work in healthcare, we seek to imbue each of these moments with the power and meaning they deserve. In hospice, even more so when we know that the number of heartbeats remaining may be limited. So when those moments are under threat, as it feels now in the face of a pandemic, we must ask what we can do to ensure that we hold up each moment of life for all of its worth.
The COVID-19 pandemic is undeniably the greatest healthcare challenge that our country and medical system has faced in our lifetimes. And while the front lines of hospitals, clinics, emergency rooms and all of their involved staff are engaged in disaster preparedness — or in increasingly more regions, active disaster management — much of the rest of the country and our communities are stuck in the limbo of living minute to minute with the changing news.
Anxiety barely seems to scratch the surface of how many of us feel. It is easy to feel powerless or hopeless when so little seems in our control. Unfortunately, this is not a foreign sensation to those with a new or worsening life-limiting illness. Imagine the mother of young children with a new diagnosis of breast cancer or the grandfather with worsening heart disease to the point that he is unable to travel to attend a grandchild’s birth. Life out of control. It is not something we actively seek to consider until we are faced with it.
And yet, there are portions of this situation and its effect on us that we can control. Not only can we control them, but by doing so, we can potentially relieve some of the burden on what will quickly become an overwhelmed healthcare system. We may not be able to choose whether or when we might be afflicted by an illness such as the coronavirus (just as we cannot choose when our hearts stop beating), but we can choose what type of care we receive when we become gravely ill.
Advance care planning is the term used in medicine to talk about our wishes for our care when we are facing a life-threatening disease — both the care we would want and the care that we would not want. This is a highly personalized form of medical planning that allows us to communicate with the people we love about our choices. In a moment of crisis, this allows them to be able to speak for us, rather than be burdened by making decisions for us — unaware of our true wishes. This helps ensure that our care is our own and that we are not simply a number or “just a patient,” but remain a person.
Having this level of conversation for anyone, at any time, may feel dark and overwhelming. But I would ask us all to look at this conversation as not just an opportunity to ensure we receive the medical support that is most in keeping with our goals and desires, but a gift we give our loved ones to be able to know without question how we feel, and what we would want if we are unable to speak for ourselves.
Ideally, we should all be having these conversations with our families and primary care providers regularly before we ever fall ill. But in our society that focuses so greatly on living to avoid death rather than living as long as possible until the last moment, it is an opportunity all too often missed. While we all wish the circumstances were otherwise, this is an important chance to talk to each other, to really communicate, about what we would want for our care if we were to become seriously ill with COVID or any other disease.
Our healthcare systems are working at full force with such dedication as has rarely been seen. And regardless of the decisions we each make, our healthcare teams will be there to care for us and support us — no matter what. When there are no options left to cure, there will always be ways of healing and caring. That part of medicine never goes away.
While we watch the grim news continuing and look for ways we can find meaning in the face of hardship, it is hard to find any sense of control. But such control may come in the form of planning. These conversations can help control what may happen to us in the future. This is the opportunity to support the people you love by letting them know what care is best for you and where you might draw a line in the sand — to say, this far and no further. And in electing a trusted decision-maker, it will guide them to speak clearly with our voice when we cannot.
As a community, we all want to support each other, and our healthcare community will continue to support us no matter what. But we cannot do so without having the conversation. By making our wishes known, we will move forward to support each other until the very last heartbeat.
For further guidance in thinking about advance care planning for you or talking with your family, please look for more resources on the HopeWest website (hopewestco.org/advance-directives-making-your-wishes-known/) or through the National Hospice and Palliative Care Organization (nhpco.org/wp-content/uploads/COVID-19- Shared-Decision-Making-Tool.pdf). Also, please consider reaching out to your own primary care provider for a telemedicine or virtual visit to discuss your concerns and advance care planning.
Please stay safe, stay home, and keep washing your hands.
Sara Warzecka MD is a hospice physician at HopeWest.