2020; Volume 21, No 10, October
In the IAHPC Survey on COVID-19 and follow-up interviews, members described their problems and solutions. We are publishing two stories as a result: this, the first, on members’ experiences of how the pandemic has affected patient care. The second, to appear in the November issue, is devoted to workplace issues.
A palliative care patient at home in Petaling, Selangor, Malaysia. Photo courtesy of Hospis Malaysia. Used with permission.
How Do We Provide Care When We Can’t Be Present?
Dr. Noel Pingoy
By Alison Ramsey
IAHPC Newsletter Editor
Of the 79 members who responded to IAHPC’s survey on the impact of COVID-19 in June, 81% said that the pandemic affected the care of non-COVID patients. Many patients lost access to hands-on treatment and care. Those who received it had to adapt to life-changing infection control measures.
“In our culture, and most likely with the rest of the world, the most important part of caring is presence,” Dr. Noel Pingoy of the Philippines writes. “Touch, intimate conversation, face-to-face interaction — essentials in palliative care — are no longer accessible due to social distancing.”
What is clear from members’ comments is the enormous effort made to provide care, even as their own stress was skyrocketing.
Providing direct care
despite lockdowns
Dr. Vibha S.P.
Country-wide and regional lockdowns left many patients without the usual access to care. Dr. Vibha S.P. of India describes her institution’s strategies in response to this “mental trauma, an additional nightmare” for the dying.
- Telephone follow-up for all registered patients.
- Link to nearby clinics and primary health care centers for symptom management.
- Link to nearby pharmacies for refills of medicines.
- Provide food kits for needy families.
- Arrange low-cost transport for patients with ongoing chemotherapy or radiation treatments.
In Italy, says Dr. Simone Cernesi, “We can ask for a special mobile unit to visit COVID patients at home, and collaborate with the GP to manage follow-up.” Dying patients are guaranteed visits by their relatives in their last days, but “nobody knows how to reduce the loneliness” of the living, and “we don’t have sufficient staff to try and keep them active.”
Dr. Julia Ambler
Dr. Babita Varkey
One patient, one solution
I had a patient (pancreatic neuroendocrine tumor) from West Bengal who wanted to return to her native community, a remote area in Siliguri, for the last few days of her life. We knew that the nearest palliative care center was in Kolkatta, an eight- to 10-hour journey. Even access to basic health care was at least two hours away.
So we made video calls to her, after she arrived in West Bengal. And we asked her nephew, who was in Bangalore, to come and collect the medicine — especially the morphine — which he sent to her by post.
So far this method has worked. And we have managed to fulfill her last wish to be in her hometown, while providing her with pain management. I know it’s not perfect, but it was the best we could do.
— Dr. Babita Varkey, India
Though some patients continue to be fearful of coming for treatment, especially when the media reports infections among staff, “we are managing to reassure most patients now, and attendance has improved,” notes Dr. Julia Ambler in South Africa. She adds, however, that COVID’s massive economic impact makes paid health care unaffordable for many.
Dr. Ruth Powys of Nepal says that “the planned development of our palliative care services have been fast-tracked in some ways,” albeit put on hold in other instances.
Ms. Madeleine Juhrmann in Australia says that the government’s wide restrictions reduced fear in the community. Furthermore, “PPE has been widely available, and clinical governance within my organization has been superb...at sharing public health guidelines to inform best practice.” Another Australian respondent notes the pandemic “has resulted in an abundance of resources and increased capacity to deliver high quality palliative care in all settings.”
Dr. Armando Arita
Telemedicine’s strengths
Clinicians and other caregivers are relying greatly on online or phone “visits,” with mixed success. Some older clients struggle with the technology, and many others are hampered by lack of equipment (e.g., cell phone, computer camera) or infrastructure (e.g., reliable Internet, affordable data).
More than a few respondents, however, described surprisingly positive aspects to telemedicine. “It gives clients easy access for minor, and even some major, complaints,” says Dr. Agnes Tererai of Zimbabwe. “It has saved them time and the expense of travel.”
Dr. Armando Arita, a psychologist at a children’s hospital in El Salvador, moved all therapy online, having taken a course that provided the right tools. The result? “Patients have felt supported...more comfortable and safe” with video visits at home. Previously, online therapy wasn’t considered a ready option for patients’ needs and emergencies, but “unexpectedly, we discovered that we can adapt our interventions to many different contexts.”
One NGO’s response to COVID-19: Lebanon
Stable patients: Regular video/phone calls & ensuring they had a sufficient stock of medications for unaltered care.
Patients with active symptoms or near end of life: Screening questionnaire prior to home visits. If COVID is suspected, patient is tested. If screening is negative, visit arranged using full PPE (gloves, mask, gown, head and shoe cover).
All patients/families: Provided with educational brochures developed by the WHO on proper hand hygiene. Supported with explanation and education by nurses.
— Farah Demachkieh, Beirut
He recommends using video — not the telephone — for calls “so that the patient realizes that your full attention is being given to their situation.”
In the U.S., Dr. Laura Morrison reports that “non-COVID patients almost completely disappeared from our settings,” but “we continued palliative care consultations and visits for established and new patients via telehealth with a great deal of success and significant volume.”
Dr. Laura Morrison
Dr. Ambler, in South Africa, uses instant messaging (WhatsApp) instead, which gives patients the benefit of direct access to the palliative care team. In the Philippines, Dr. Pingoy does the same, using Facebook messenger but also Viber, an app for video calls as well as messaging. “Patients can readily communicate their concerns as well as upload copies of pertinent diagnostics results. E-prescription is also allowed; thus, venturing out of the house to see a doctor is greatly minimized.”
While we do not know what the future holds, by early September lockdowns had eased, transport services had resumed, and hospitals were accepting non-COVID patients. But some members say they will continue to use telemedicine, as it has worked so well in certain circumstances.
A lesson for the future
“This was an unprecedented situation and no one was prepared to face it or handle it,” concludes Dr. Babita Varkey. “Everyone tried to do the best they could with the resources they had. Hopefully, this novel coronavirus has taught us a lesson in being ready for the next crisis.”