Perspective and Peace for Families Dealing with End of Life Care Right Now

Russ Krengel Hospice

Hospice does not stop for a world crisis.

In uncertain times, end of life care remains a critical part of medical attention for those nearing the end, maybe even more important in times of crisis than at other times, in terms of both the experience as a patient and as a family member caring for a dying loved one.

A major world crisis like we are all experiencing today can create a general sense of anxiety and urgency, especially when it comes to your health and the health and safety of your family. In the days leading up to an official announcement of a disaster or pandemic, empty store shelves and the depletion of provisions for the general public seem to happen overnight. But that is not really a factor when it comes to end of life care for a loved one. Both life and death will continue, in some form. For those nearing death, the hospice experience can go on with little care or concern for the rest of the world. And that is probably as it should be.

How do you plan for a worldwide crisis if your loved one is a hospice patient? The same way that you plan for one in any other time, because the Coronavirus is not the first and it will not the last global crisis to occur. In fact, it is not the only one happening right now.

We all hear about how to plan for disasters from our local emergency responders and the media. When the threat is high, we have emergency kits and extra batteries, flashlights, canned foods, water and radios. We now know what we need to adapt and we must listen to the experts. We keep an eye on the news, we pay attention, we take the warnings seriously. We plan.

But when you’re caring for a critically ill relative at home, there really is very little difference in terms of what to do and how to do it

Hospice and palliative care is a challenge to cope with, even when everything else in your world is running smoothly. But when a global crisis looms, stress and uncertainty can feel overwhelming. We live in an increasingly industrialized world, interdependent, where a wide range of manmade and natural disasters including terrorism, epidemics, hurricanes, earthquakes, floods, and fires are all becoming more commonplace. It has been estimated that at least one catastrophic disaster occurs somewhere in the world every week. In 2010 alone, 373 natural disasters killed over 296,800 people and affected nearly 208 million others, making it the deadliest in at least two decades.

In the past 50 years, there have been over 10,000 reported natural disasters, affecting 12 billion people and resulting in 12 million deaths.

Events involving hundreds, thousands, or even tens of thousands of victims have been labeled “mass casualty events” (MCEs) and have been shown to compromise the ability of local or regional health systems to deliver services consistent with established standards of care.

Under many circumstances, palliative care services for those likely to die will fall mostly to first responders, alternative care site providers and often to people without substantial prior experience and expertise, such as laypersons and by-standers at the event or triage sites, especially if priority transport for ‘survivable’ patients delays other victim relocation. Effective pain and other symptom management should be a basic minimum of service delivery and training for MCE palliative care.

At minimum, disaster response palliative care services should include aggressive relief of symptoms and, where possible, ensure that those likely to die are as comfortable as possible. In order to effectively provide palliative care services in an MCE, clearly articulated protocols will need to be established, palliative care supplies (including those necessary for appropriate pharmacologic treatment) will need to stockpiled, trained staff (including mental health, spiritual counseling) will need to be recruited, and appropriate space will need to be identified and incorporated into response planning. Furthermore, where possible, triage should place expectant or likely-to-die victims at alternative care sites (ACS) with palliative care capacity rather than hospitals, which will be overwhelmed with the frightened and victims most likely to survive the event.

Obviously, when a disaster occurs, communities must be prepared for the possibility that the deployment of medical assistance may be delayed or downgraded and that governmental assistance may be overstretched by multiple challenges and competing demands. The tough decisions that will have to be made must be ethical, and must be seen as fair and in the best interests of the community at large. Palliative care providers are usually separate teams from those first responders and front line doctors and nurses. Hospice services will still be able to provide kind, effective, and medically appropriate treatment choices, even when resources are scarce. In fact, they remain a strong source of help in these times, usually a welcome alternative to “doing nothing” or ineffectively utilizing scarce resources.

In these times, hospice remains a caring and safe option for end of life care. In fact, hospice care can bring some calm and normalcy when the rest of the world may seem untethered and faltering. The final moments of a loved one do not have to be scary or difficult when hospice care is available. Hospice workers are still here for you and your family.