Following are COVID-19 frequently asked questions answered by Dr. Diane Meier, director of the Center to Advance Palliative Care. You can also watch the video.
Is palliative care even more important at this particular moment in time during COVID-19?
Palliative care is perceived as essential. We are an essential part of healthcare for all people living with serious illness, including during this pandemic. Everyone hospitalized with COVID-19 is, by definition, seriously ill. Communication and symptom management are crucial at a time like this.
What is palliative care?
Most people have never heard of it or have no idea of what palliative care is. It is a medical and nursing specialty just like cardiology or nephrology or pulmonary medicine. But palliative care specialists are focused on the whole person and maximizing quality of life during a serious illness. Now that serious illness could be something we hope to cure you from. It could be something that is chronic that you will live with, hopefully for decades. Or it could be an illness that is progressive, like widespread cancer for example. We’re here to help the patient and family improve quality of life. We do this by reducing both their physical symptoms and their stress.
Why is communication so important during COVID-19?
What has happened with this pandemic is that almost every patient needs what palliative care provides. And there are two main components: One is expertise in symptom management. A lot of COVID-19 patients are quite short of breath and need help. They also need help reducing that very frightening feeling. And then on the other hand, palliative care specializes in communication skills. We as humans are not born with excellent communication skills. And the same is true for doctors and nurses. But there is an urgent need for skilled communication. This is especially the case with the distraught families of patients who are not allowed to come into the hospital and cannot be at the bedside as they always have been in the past.
Families know that they are giving their precious loved one into the hands of a bunch of overwhelmed, overworked, exhausted healthcare providers. The suffering is incalculable. And what palliative care teams do is create a bridge, a bridge that connects families and other loved ones in the community, not only to the doctors and nurses taking care of them in the hospital, but also to the patient themselves. And that is such a profound help. So, I mean, it is the most essential thing. You know that bridge has to happen.
How can patients and families ask for palliative care at a time like this?
They should ask their doctor for it. Also, there is a palliative care provider directory on a website called GetPalliativeCare.org. You can type in your zip code, your city and there will be a dropdown menu of all of the palliative care programs in your community with phone numbers. And that way you as a family member or as a future patient, or hopefully not a patient, can look up what the resources are in your community and reach out and understand what they are doing during this pandemic that will help people like you. I hope that one of the outcomes of the COVID-19 pandemic will be the recognition that it must be universally available across the country.
Can you give an example of good communication in action?
So the other day I spoke to three adult children of a 72 year old man who had come in from a nursing home and waited while they all got on the line and introduced myself and asked them to tell me about their dad and what sort of person he was.
And it was quite remarkably cool to hear about him as a human being and how much they loved him and what a remarkable person he was. And then I asked them for their questions about what was going on now, and they asked me exactly what I knew they would, how does he look? Does he seem comfortable? Is he upset? How is his oxygen level? How are his vital signs?
Then we got down to, what did he say when he was well about what he might want in the future? If he got very, very sick, we need to know what to do should that occur because he is in a higher than average risk age group because he’s over 60. They were very clear that he had said to them multiple times that he did not want a tube shoved down his lungs or resuscitation should he be near death.
So, it was a very nuanced conversation. He and they wanted us to do everything we would normally do for a patient with COVID-19, short of basically cardiac resuscitation.
When do you ask people what they would want if they get very sick from COVID-19?
When we do ask people what they would want, should they get very sick from this virus, they do not all say the same thing. Surprise. You know, some people really want to go to the hospital, and want every shot at prolonging life. Some people have been in a hospital before and they want no part of it, or they are aware that the consequences of being very, very sick in the hospital with lead them to a quality of life that they did not want. They might feel safer and more secure and more in control if they remain at home and try to ride this out at home. And we can truthfully say that my colleagues all have patients who are in their seventies and eighties who have ridden this out at home.
Can older people stay at home with COVID-19?
We can’t say that if you’re over a certain age you must go to the hospital or otherwise disaster occurs. That is not the case. So, some people make the choice to take their chances in the hospital and other people make the choice to take their chances at home. But we have certain obligations. If someone says, I’m going to take my chances at home, we’re not going to abandon them.
What should you expect from your healthcare providers if you decide to ride this out at home and shelter in place?
The health care system owes patients and families at least two things. One of them is that we have to make sure that should they develop symptom distress or suffering, shortness of breath for example, that there are medications in the house that will relieve that immediately. This is not something that you can stay home with. We have to honor that wish to stay home and make it possible to stay home by putting the meds in the refrigerator. Doctors call these comfort packs and they contain medications that relieve shortness of breath and anxiety and other symptoms. They just sit in the fridge and hopefully they will never be necessary. But they’re there as an insurance policy.
The second issue is that many of people have family caregivers with them at home, and they are also at risk. They also need support. The family caregiver needs to find someone they can talk to. It can help to find another family caregiver and share your stories with each other and support each other. Palliative care teams also have social workers as a core part of the team.
How do family caregivers get through this when they’re taking care of their loved one at home?
It will help no one if both the patient and the caregiver are sick. So how do we help them to basically be providing medical support even though they’re not nurses or doctors. And what that requires is 24/7 access to a health professional who can walk them through it and can say: “Here’s what you need to know. If he/she starts developing shortness of breath, take out the comfort pack. Open this bottle, use the syringe, draw up to this number on the syringe. Show it to me on your phone or on your tablet so I can see it. Put it in their cheek. I’m going to sit here on the phone with you and we’ll both wait together to see if it works.” You see how that conversation makes it possible?
Where can you go to learn more about all the things that we’ve just talked through?
So we have developed a website to clarify what palliative care is. The site shows you why it’s so important for quality of life and and when it’s right for you whether you have cancer, ALS, or you have dementia, or you have emphysema, or you have COVID-19 or any other serious illness. You can read about palliative care by different diagnoses. The site also discusses support for the stress and symptoms of serious illness, support for information-sharing so people understand what’s happening, what to expect, and what to do if something worrisome arises. That’s the information that people need. It’s remarkable what patients, family caregivers, and other caregivers can do. All they need is someone holding their hand and supporting them.