Where and Who?

There is an exercise I have done with my staff, with medical students, and even with patients over the years. I ask them to think about how they would answer the following: If you could decide…”Where would you want to die and who would you want with you?” I have very rarely heard someone reply…”in the hospital.” Most people say they want to be in their homes surrounded by their loved ones and the majority of time — those under the care of hospice — are able to have that goal met. But for those who are experiencing their end-of- life journey in the hospital or in a setting (including home) where their needs cannot be met to ensure a peaceful, comfortable, and dignified death, is there another option?

I sit in my office while writing this. Across the street is a 14-bed inpatient facility specialized in providing the highest quality end of life care our community has to offer. There are seven patients in those beds as I write this article. I have trouble believing that there are not more people out there who could benefit from this incredible resource and care. Our community hospitals are often full and overflowing. Patients admitted but stuck in the emergency department for days at a time. The hospital staff trained in aggressive and curative interventions that are not necessarily a one-size-fits-all approach.

If you or your loved one was facing their final days and could not be at home, what would an acceptable alternative look like? Private, spacious rooms that can accommodate visitors at any hour to include pets? Compassionate and dedicated expert caregivers devoted to ensuring physical, mental, spiritual, and emotional comfort? Professionals trained and at the ready to assist in those hard decisions like funeral arrangements? Chaplains and social workers helping both the patient and their loved ones navigate through such a vulnerable and uncertain time? A chef ready and willing to provide food to the patient if applicable but also to those loved ones at the bedside? Places for loved ones to stay the night, shower, and be as present as much as they feel they need to be? The ability to feel clean and have your very basic needs attended to with compassion and dignity?

I have just described the Hospice of the Panhandle Inpatient Facility. Having worked with the dying for over a decade, I can assure you there is such a thing as a good death vs. a bad death. And while the patient has moved on from this world, those memories, that experience stays with us left behind for years to come. As a hospice and palliative physician, I strive to ensure the most dignified and comfortable passing for my patients but beyond that an experience that leaves the loved ones feeling at peace.

Do I think this care can be provided in the same way in other facility settings? My answer is NO. How can I answer so confidently? Well, for one, I have worked in our local hospitals and know first-hand what these institutions are built to do and it is NOT end-of-life care. But even more telling and powerful is the family testimonies I hear:

“My mom has not had a bath in several weeks and by giving her that care, you have given her back her dignity.”

“Doc, I have not seen my dad this comfortable in weeks.”

I hear accounts of people in physical restraints, people in extreme pain because the hospital is not comfortable giving medications with palliative intent. I have seen the damage false hope and avoidance of difficult conversations on the part of medical professionals can have on the patients and their loved ones.

Please do not misinterpret what I am saying. I am not attempting to shed a negative light on the hospital, the staff, or my community colleagues. I do not have the knowledge or skills to perform major surgery on you or your loved one. That doesn’t make me less of a doctor. It makes me specialized in my

field of medicine. I am trying to underscore the reality that our community hospitals are not designed, trained, staffed to deliver the highest quality end-of-life care. And yet, with the half-full facility across the street, I am reminded that too many of our people are spending their final days not receiving the highest quality end-of-life care.

So, why is this service underutilized? I do not think there is just one factor. I spend much time meeting with my staff and community partners trying to understand the barriers and obstacles and I believe there are many contributing factors. But I will expound on what I believe to be the greatest obstacle and one I need help overcoming… stigma.

It goes without saying that the end result is not a desirable one. Entering hospice care does mean the end of life is approaching. There is no way to sugar coat that and given we are all mortal; there’s no way around that. However, when something is unavoidable, inevitable, shouldn’t we still strive for hope? Hope no longer for a cure, for one more round of antibiotics, for one more chemotherapy treatment, but instead for peace, comfort, and relief from unnecessary suffering? People do not want to talk about it and that largely includes doctors. Denial and avoidance all too often leads to futile care, expedited death, no time for closure, and preventable anguish.

So to the medical professionals reading this: I implore you to have those hard conversations even though they are uncomfortable. We are highly trained and the signs of a shortening prognosis are typically very apparent. You are not failing your patients but rather giving them the gift of transparency, time, and above all autonomy. You give them the opportunity to decide how they spend their final hours, days, weeks, months. Yes, it may take more time and effort to navigate the logistics of getting your patient to another level of care such are arranging transport or writing discharge orders. But those small inconveniences are a small sacrifice to ensure the best possible care for those you serve.

To those patients and loved ones reading this: I empower you to advocate for yourselves. We are talking about your body and yours alone. You have every right to decide what interventions you wish to receive or more importantly not receive.

In closing, I pose adding another question to the exercise. Where do you want to die? Who do you want with you? And lastly HOW do you want your experience of death to look?

Dr. Sarah Phillips has been medical director at Hospice of the Panhandle since February 2013. She holds a certification as a hospice medical director. Hospice is a not-for-profit agency that has cared for patients and families with life-limiting illnesses in Berkeley, Morgan, Hampshire and Jefferson counties since 1980. Panhandle Palliative Services has been operating since 2021. For more information on how hospice or palliative care can help you or your family, call (304) 264-0406, or visit on-line at www.hospiceotp.org