March 2021
Medical interventions can help to prevent, cure, and treat disease, but there are limits: the end of life..
The COVID-19 pandemic has taught us many lessons about the fragility of life and the limits of medicine. It has also shone light on the need to provide end-of-life care for all patients who need it. Against this background, PAHO and the Massachusetts General Hospital created a monthly tele-mentoring program, based on the ECHO methodology, as a contribution to strengthening palliative care services throughout the Region. The program is divided into two groups, one for Latin America and the other for the English-speaking Caribbean. The first is jointly organized with the Latin American Association for Palliative Care, while the Caribbean group works with Caripalca and the Jamaica Cancer Care & & Research Institute.
We spoke about the PAHO Palliative Care ECHO program with Dr. Patricia Bonilla, president of the Latin American Association for Palliative Care and professor and researcher at the Private Technical University of Loja (Ecuador), and Dr. Mark Stoltenberg, professor in the palliative care and geriatrics departments of the Massachusetts General Hospital and Harvard Medical School and advisor to PAHO in palliative care and public health.
Dra. Patricia Bonilla
Dr. Mark Stoltenberg
. . .
What is palliative care?
Palliative care is a response to the suffering of patients with serious illnesses. While medicine aims to prevent, remedy, and cure diseases, we know that there are many diseases and health conditions that we cannot cure; hence the need to deal with end-of-life care and those with chronic conditions. Palliative care consists of managing pain and other physical symptoms, together with psychosocial and spiritual support for patients and their families. Dr. Stoltenberg reminded us that although we might not be able to cure the disease/medical condition, we can provide supportive care to people who need it. There are extremely important things we can do to support patients and their families, minimize suffering, and help patients explore spiritual questions about why this is happening to them, bringing meaning and value to their lives, even though their disease cannot be cured.
Who provides palliative care and what skills are required?
As well as medical palliative care specialists, the care team should include people with a basic knowledge of palliative care at the first level of care. In the case of patients and families in complex situations, the team might also include a psychologist, social worker, and chaplain. Care can also be provided by volunteers and non-medical people. Since few healthcare students receive formal undergraduate or graduate training in palliative care, there is unfortunately a significant shortage of providers who are able deliver palliative care services.
In addition to managing symptoms such as dyspnea, pain, and other complications, it is necessary to have communication skills to empathize with patients and their families, in order to maintain hope, prepare patients for what might happen, and provide guidance on what they might wish to say to family members.
It is also important for palliative care teams to help colleagues keep up their morale, allow time for reflection, and have access to an interdisciplinary team consisting of psychologists, social workers, chaplains, and others who are genuinely prepared to discuss the multidimensional aspects of pain and suffering––not only of patients, but also of health providers themselves.
"Palliative care intervenes to
remind us that even if we can't heal,
we can still provide care."
Who can get palliative care?
Ideally, everyone who needs palliative care as part of their continuum of care should receive palliative care services. However, less than 10% of people around the world who need it have access to it. According to the Atlas of Palliative Care in Latin America only 7% of patients receive palliative care in Latin America, where it is mainly focused on cancer patients in the more heavily populated cities. In smaller cities and rural areas, access to palliative care is inadequate. There is some scope for providing palliative care for patients without cancer, such as frail older people or those with diseases of the central nervous system (such as Alzheimer's) or kidney failure. In the Americas, there is a serious shortage of palliative care providers and services for patients with heart or respiratory failure. According to Dr. Bonilla, palliative care should ideally be available for everyone who needs it.
Where are these services offered and how much do they cost?
Dr. Bonilla explained that palliative care is normally provided free of charge in hospitals and in some primary care centers in the Region. In some countries it is covered by private health insurance. End-of-life hospice care also exists in some countries, but these are rarely free or government-financed.
Can palliative care be delivered in patients’ homes?
Dr. Stoltenberg said that volunteers are essential for maintaining contact with patients who need palliative care and live at home. Patients do not always require a doctor or nurse to be on hand, and the volunteers provide patients with humane and sympathetic support.
As for coordination with social services, Dr. Bonilla explained that this is rare in most countries in Latin America. For example, in Argentina, Uruguay, Colombia, and Venezuela there is a real and supportive concept of social work, whereas in Ecuador social work tends to be found only in the larger cities. In Chile, palliative care is provided exclusively for cancer patients in accordance with the national law. Some NGOs also deliver at-home palliative care.
"Currently less of 10% of the people who need palliative care in the world, receive it, and only 7% in Latin America."
Are medicines for palliative care widely available?
Dr. Stoltenberg said that over the past decade the availability of the necessary pain relief medicines has increased in response to demands for improved access to these drugs. For example, in Jamaica and Belize, access has improved thanks to the Caribbean Association for Palliative Care. In Chile, there is reasonable access and the situation continues to improve in Colombia and Argentina.
Dr. Bonilla stressed that the need to divert medicines to COVID-19 patients has led to a shortage of palliative care drugs such as morphine for the treatment of pain and dyspnea, and benzodiazepines such as midazolam for palliative sedation.
The COVID-19 pandemic has put a spotlight on the exhaustion and stress experienced by healthcare workers. What is the situation of palliative care staff and what can be done about it?
Dr. Stoltenberg said that work-related and individual factors can cause burnout and stress. While we sometimes overstate the individual’s ability to be strong and to develop strategies for resilience, a better approach would be to focus on work-related aspects and consider how we can help palliative care providers feel more supported. There are several ways to do this, starting with expressing gratitude and appreciation. Recognizing that stress and burnout are very real helps caregivers express their feelings when they are exhausted. It is important that they have someone to talk to so that they can explore and share their feelings. It is also important to help them regain a sense of control over their schedules and learn how to adapt to their patients’ needs. It is important to help them see how they can feel in greater control of themselves, even in a pandemic.
Dr. Bonilla went on to say that there is a lot of fatigue, with multiple causes, including fear of infection, fear of dying, and the risk of staff members infecting their own families. At the start of the pandemic they were handicapped by the shortage of supplies, or felt powerless when excluded from decisions made solely by intensive care physicians. Staff also suffered from burnout because they were not able to work properly as teams. Many were negatively affected by seeing patients suffering and dying alone, separated from their loved ones. "Although we are not at the same point in the pandemic as we were a few months ago, all these factors lead to burnout, post-traumatic stress, and grief caused by everything that has occurred."
Dr. Stoltenberg highlighted an event during the first wave of the pandemic which exemplifies one positive aspect of the contribution made by palliative care: “In April last year, there was a nurse working in a special COVID-19 end-of-life unit. She witnessed the third or fourth patient die in twelve hours and telephoned the family to report that the patient had passed away. She spent twenty minutes talking, emphasizing how good the treatment had been, and the kindness and consideration shown to the patient. When she hung up, three of the nurses by the bed were crying, saying “We are exhausted, but hearing your affection and compassion for this family, on your third call tonight, you are inspiring us to carry on. So, thank you for that call and the way you spoke with the family."
THE ECHO PROJECT: Everyone teaches, everyone learns.
The goal of the ECHO project is to build capacity among healthcare providers through case-based learning and joint patient management using videoconferencing technology combined with clinical management tools to connect specialized consultants with primary care providers in rural and underserved areas.
The ECHO educational methodology began in 2003 in New Mexico. Since then, the ECHO Project model has expanded to cover infectious diseases, rheumatological diseases, chronic pain, addictions, HIV, diabetes, complex multi-system diseases, cancer prevention, and palliative care. Currently, more than 320 academic centers in the US and around the world serve as ECHO centers.
Two ECHO projects were started in conjunction with PAHO––one in the Caribbean and the other in Latin America––to enable palliative care providers with different levels of training to share cases with experts. Monthly 90-minute sessions provide an opportunity to present and discuss a practical case, followed by a didactic session.
The Palliative Care ECHO Project has contributed to the training of personnel working in this field and has also emerged as a useful platform for palliative care workers to address burnout and stress, helping to generate a feeling of community.
Dr. Stoltenberg added: “Participating in these ECHO programs has really shown me the heroes throughout the Region––people at all levels of training. It is incredibly motivating and humbling to see these individuals who are willing to take an hour and a half out of their busy schedules. We are reinvigorated by the experience and are willing to help in any way we can so that everyone in the Region can continue these programs.”