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Tuesday, March 17, 2020

The Voice and Role of Palliative Care in the Era of COVID-19

by Suzana Makowski (@suzanakm)

The guidelines outlined in the recent letter co-sponsored by Pallimed and Geripal serve as important reminders of key messages for clinicians: social distancing, handwashing, use of personal protective equipment to help flatten the curve of viral spread, adhering to protocols about screening, testing and even triaging.

I would advocate for another layer of engagement in this effort. Palliative care as a specialty is uniquely positioned to address the people who are likely to be disproportionately affected by the disease: the chronically ill and the aged. After all, this population is the demographic adult palliative care clinicians see frequently.

There is a likely double risk to this population – first from the virus itself. While the overall mortality rate of COVID19 is likely to hover around 1-2%, the mortality rate for people over 80 has been reported to be 14.8-21.9%, for patients with cardiovascular disease 10-13.2%, diabetes 7-9.2%, pulmonary disease 6.3-8%. The second risk is from the triaging that will occur if indeed the burden to the US health system is even half of what is predicted.

In this second scenario, hospitals, ICUs, will be overflowing with cases, as reported currently in Italy. The number of hospital beds per capita in the US is far less than those in many other countries. In Italy, ventilators are considered to be gold. Triaging is occurring, with an aim to prioritize intensive care, ventilator utilization for patients most likely to survive the infection, rather than those who have the greatest likelihood of a poor outcome. News articles are telling stories about older people and those with chronic conditions, being sent home. The implication is they are left alone, without resources.

As Dr. Kathy Kirkland, Chief of Palliative Care at Dartmouth Hitchcock Medical Center notes, “decision support both for individuals and also for the organization if they are in the position of deciding how to allocate scarce resources is critical in times like these, and making good decisions in the face of uncertainty is one of our areas of expertise.” There are people who will choose not to be intubated, and they likely need to know , what might they can expect. ‘No care’ should not be their perception as the ‘other option’. As palliative care experts, it is incumbent on us to define what the alternative will be.

Social distancing means providing alternatives to testing in hospitals and getting supportive care in hospitals. Visiting nursing agencies around the country are training nurses to test patients in their homes. Supporting these agencies, as well as engaging hospices to help optimize symptom management at home is crucial.

Aligned with all of this, ensuring patient’s care wishes are known and documented is perhaps more critical than ever. A fear I have heard is the perception that discussing code status will equate with no treatment or triaging out of care. I understand this fear. I remember recoiling with horror upon reading the New York Times Magazine, and then hearing the keynote at AAHPM annual assembly outline the horrific and difficult decisions made at Memorial Hospital post Katrina. Patients with DNR orders left aside or euthanized. Thankfully now POLST orders allow for distinction between code status from intensity of treatment preferences. And comfort should always be provided.

Our voice about how to help make these decisions, along with ethicists (many of us are both) can change the dialogue of triaging this pandemic. We can honor a patient’s wish to be DNR with intubation by asking of their wish, and in doing to perhaps help alleviate some of the anticipated strain on access to ventilators and non-invasive ventilator support, while actually also ensuring the patient still receives care and treatment.

Palliative care, often in partnership with the work of home health agencies and hospices is leading the innovation in telehealth to enhance care at home. Already, in the early weeks of March there has been an upswing in use of telehealth among palliative care clinicians. Patients are asking for alternatives to clinic and hospital visits – wisely, and our field is responding.

We learned at CAPC in the fall of 2019 about colleagues using encrypted conference lines to facilitate the visits, even if formal telemedicine programs are not available to a group or institution. Honestly, we have for years held family meetings where family members who are out of state or out of country join the meeting via cell phone, FaceTime, WhatsApp, Skype, or another similar program. Now the process is going to be more formal. What patient encounters can we do in this manner, compared in in the patient’s room? In some ways I can engage in a more personal way using video conferencing where my face, my expressions, my non-verbal cues can be seen rather than my body hidden from within the confines of an N95 mask and goggles, or powered air purifying respirator (PAPR).

Patient education and caregiver support is another area of our expertise. But now we need to educate and support more people. Our specialty has also been a leader in use of social media for collaboration and education of peers. How can we build on this movement and provide a platform to share best practices with lay caregivers, as well as the aides and nurses in long term care facilities who have not learned the tricks of our trade?

You know all this – but what do we do differently?

For all the strengths of our specialty, there is one area we are generally no too familiar with: the step to be proactive. We tend to be the specialty to respond when all else fails. But now, we have to step in early.

To flatten the curve of this disease, we have to use all these tools and skills in the following strategic way by partnering with our organizations, regional, and state task forces to:

1. Define processes and interventions to keep people home who would prefer to avoid hospitalization.

- POLST allows patients to choose to receive full interventions, or some, or comfort. It is not about absence of care. How can we help patients make their wishes known now, without fearing being triaged away from care they would want?

- We must support VNA and hospice agencies in their efforts to screen, test, and treat patients at home. Partnering with them in expanding telehealth visits, patient and staff education about symptom management, and other creative initiatives should be considered.

2.Being a strong voice, along with ethics, in defining and clarifying the processes of triaging patients when resource allocation is slim.

- At the bedside (or via telehealth) – we are well suited to facilitate these discussions, and support families through the tough choices, especially if a true choice is available.

- In the boardroom – we cannot allow the alternative to ICU to be ‘no care.’ If a patient with a chronic illness is dying of COVID19 complications, we know how to alleviate their breathlessness, nausea, fear, abdominal pain better than just about anyone. Those protocols need to be at the table.

- Perhaps the triage can happen before the hospital, in the community, with optimal care there. We need to be the interdisciplinary voice to facilitate the possibility of this partnership and coordination of care. We do it every day in discharge planning. Now it is time for us to bring it to the intra-organizational level.

3. Use our foundational principles.

- We have multiple frameworks for dealing with crises – Maslow’s hierarchy of needs, biopsychosocial approach, 8-domains from EPIC, etc., and a recognition of as well as embedded process of interdisciplinary collaboration like few other groups in healthcare to address not only the medical and physical needs of patients and families, but the full catastrophe of this pandemic.

- We have the voice and practiced reflect to collaborate with people who see challenges from differing points of view presenting a variety of solutions.

- We can help our health system understand how to collaborate with the wisdom embedded in our communities – not only the doctors, nurses, social workers, and chaplains we often work but even beyond. It is time to expand our interdisciplinary team. How wide? It’s your decision, based on your community.

We are called to step up, not merely to participate in the rules and recommendations recommended by the epidemiologists, infectious disease experts, and others but to come to the table with ideas and perspective to mitigate the extent of the possible challenges and alleviate the suffering our communities are about to experience.

Lastly, I do wish to address another concern. Like just about every physician and nurse, healthcare professional, we are called to step in when times get hard. There is a temptation to be a hero or even martyr of some sort. We like to be close to our patients, to hold their hands, to share a hug when needed. But now is not that time. We have to find other ways of leaning in, lending strength, being present with, other than physical closeness. For many of us, this will be hard and even feel as though we are failing our patients, or part of our own sense of purpose. The greater good must prevail right now. Remember music can touch a heart from a distance. Your skill in listening and being present can also transcend distance.

Suzana K. Everett Makowski, MD MMM CPE FAAHPM FACP comes back after a long hiatus to contribute to Pallimed again. She currently is Chief of Palliative Care at Exeter Health Resources, a community health system in New Hampshire. Having grown up internationally as a citizen of Brazil and the US, she has a passion for inter-cultural communication and collaboration in palliative care. Other areas of interest include complexity science and positive deviance, lean and culture change, leadership and innovation.

She can be found on Twitter @suzanakm

For more posts on COVID-19, click here.
For more posts on Emergency Preparedness, click here.
For more posts by Suzana Makowski, click here.
Check out the Pallimed COVID-19 Resource page here.

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