Palliative care for a pandemic

The coronavirus disease 2019 (COVID-19) pandemic has brought palliative care to the forefront of internal medicine. As the novel coronavirus makes more patients seriously ill, with common symptoms including acute shortness of breath, physicians have reason to turn to those already expert in this difficult subject.

In a March 24 interview, Diane E. Meier, MD, FACP, director of the Center to Advance Palliative Care (CAPC), part of the Icahn School of Medicine at Mount Sinai in New York City, addressed how palliative care expertise and resources are, and can be, applied to the current crisis. (For additional resources, read this article.)

Q: What is the role of palliative care in this pandemic situation?

A: Palliative care is support for the best possible quality of life and relief of symptoms and stress during a serious illness, whether the illness is curable, whether the disease is one that a patient can live with for many years, or whether that disease is progressive. It's the full range of experiences of humanity living with a serious illness. That's the standard delivery of palliative care—accessible to people based on their need for support. Obviously, we are not in standard circumstances anymore.

At the moment, we're in a contingency stage—moving to crisis stage—about how we allocate resources, and to whom we allocate resources. And just as everyone's talking about ventilator allocation or ICU bed allocation, we are also talking about palliative care allocation. Because unlike ventilators and ICU beds, everyone needs some element of palliative care during this crisis. They are terrified. They're coughing and feverish, they may be having some difficulty breathing, their families can't come visit them. If they're home with these symptoms, they're not sure what to do. Palliative care expertise is required very, very broadly, not just for the highest-risk, most complex patient. So we have to think really carefully about how to allocate the scarce resource that is specialty-level, palliative care-trained people.

Q: Are there groups of patients that will have particular need?

A: One is people who either don't come to the hospital because they don't need to be in the hospital or choose not to come to the hospital. There may be a large number of people with COVID-19 plus or minus other medical conditions—heart failure, emphysema, cancer, frailty, dementia. So what the Center to Advance Palliative Care and my colleagues at the Mount Sinai Health System are building are approaches to caring for people who are at home or in an assisted living facility or group home or even a nursing home.

At Mount Sinai we have established a 24/7 palliative care hotline that is staffed by palliative care specialty-trained and experienced clinicians. We will also be providing comfort packs to patient and families with COVID-19 who choose to ride it out at home and want access to symptom relief if needed. Comfort packs typically contain small amounts of medicines that relieve shortness of breath and pain (such as concentrated liquid morphine and lorazepam). These are routinely provided in the care of home hospice patients, so that symptoms can be quickly relieved at home. We are doing something similar for COVID-19 patients who prefer to stay in their home but want assurance that their symptoms will be managed and that they can reach a clinician for advice and counsel at any time through our 24/7 hotline. That way, we can provide counseling, support, relief, and guidance to caregivers, whether they are family caregivers or nurses who are taking care of people in the community.

Q: What will the palliative care clinicians staffing the hotline be able to provide?

A: That support may be as simple as listening, providing reassurance, providing support that families are doing the right thing, helping them understand what to do about infection control, if they've got somebody at home who looks like they may have the virus or if they themselves are developing the virus. How can we support people to, as we say these days, shelter in place?

These clinicians will also advise patients when to open and use the medicines in the comfort pack, talking them through proper choice of medication, dosing and administration.

Q: What can be done for inpatients?

A: Increasingly, especially in New York City, most people in the hospital are now there because of COVID-19 and they are [at] risk of developing rapid instability, that is, difficulty breathing. In that situation, again, what we are doing is setting up a 24/7 hotline—this one aimed at our colleagues, other clinicians across the system—so that rather than paging the palliative care consult service and standing by the phone waiting for a call back, any clinician working across the large Mount Sinai Health System has access to this hotline and can get immediate advice, say, [if] they're trying to manage dyspnea.

In addition, that 24/7 hotline support is aimed to help our colleagues who are engaged in conversations with families, often that are telephonic because of the visiting restrictions, in which families are understandably distraught, terrified, anxious, feeling terrible that they're not with their loved ones. Members of the specialty-level palliative care team, whether physicians, nurses, social workers, chaplains, will be available through this hotline to support our colleagues in these often repeated phone conversations.

Q: What advice can you offer on having these conversations?

A: In the past we would say, “Tell us about your mother. What things were most important to her? What gave her joy? What would she say to us if she was sitting in the room here now? And if she were to get sicker or need a breathing machine, tell us what you think she would say under these circumstances.”

While we still are able to have those kinds of conversations, with medical decisions guided by the patient's wishes, at a point in the not-too-distant future, we may have to be guided by availability of resources. We hope that time never comes, and to try to make sure it doesn't we are seeking hundreds of ventilators and new hospital space to allow us to provide intensive care for all who need it. No matter what resources are available, we will always be able to promise that “We will take care of you, we will provide oxygen to support your breathing, we will provide medications to help with breathing and make sure that you are comfortable, and we will be in regular telephone contact with your family.”

Q: Are these conversations also more necessary now with patients who don't have COVID-19?

A: Under normal circumstances, many people who are very unlikely to benefit from hospital care end up in the emergency department or in the ICU on a ventilator, because discussions about what they would want in this eventuality have never occurred. No one has talked to the patient or their family about CPR, no one has talked to the patient or family about their options for care along the lines of the [physician order for life-sustaining treatment].

It's really important, whether patients are at home or in a facility or in the ED or in the hospital, to first ask people, regardless of whether they yet need these resources, if they would want them if they did need them. Ideally, these conversations would be as routine as talking about seatbelts and bike helmets and vaccines in the primary care setting. Unfortunately, that still has not occurred in our country.

Does the COVID-19 pandemic highlight the urgency of talking to people and documenting what is most important to them? It absolutely does. Because otherwise we may be, for example, as we did last week, having people with end-stage dementia who haven't spoken in years rolling into the ED with no evidence of their prior wishes and no ability to contact a family member.

Under New York State law, that person ends up in the intensive care unit on a ventilator. And if we had more information that patient might have been spared having the tubes stuck into their lungs and all of the other distress and burdens associated with critical care.

Q: What other advice would you give internists right now?

A: I think the main issue is that, for all clinicians, our first and foremost job is to identify and relieve sources of suffering. And particularly in the COVID-19 environment, where all available treatments are experimental and variably accessible, our first obligation is to provide psychological, existential, and spiritual support to people who are understandably terrified, but also to ensure meticulous management of symptoms.

It's one thing to get through this if you basically feel like your normal self. It's another thing if you can't catch your breath. It's every physician's job to know enough to safely relieve dyspnea and other sources of symptom distress. It's not about prognosis. It's about need, it's about the relief of suffering, and it's everybody's job.