New article on privilege in palliative care
By the ePAC team
December 25, 2019
As COVID-19 rips through our communities, those who are socially disadvantaged will likely be among the hardest hit. Many socially disadvantaged people live with compromised immune systems and in situations where physical distancing is not possible. They may not have family and friends to support them. They are at HIGH risk for contracting COVID-19 and getting very, very sick. They may be at increased risk of dying.
Those of us working in inner city palliative care are concerned. It may be impossible for our patients to follow public health recommendations. How do you hand wash when you don’t have places to wash your hands? How do you physically distance when you exist in crowded spaces? How do you isolate when you don’t have a home or a place to isolate in? Many regular services that people rely on for food, shelter, and health care have had to limit services or close their doors altogether to prevent the spread of infection. People’s regular support systems and their ability to protect themselves are severely hindered.
Now, more than ever, we need upstream equity-oriented palliative approaches to care so that existing disadvantages are not made worse through this pandemic. We need to support people to know that they won’t be left behind and help them to prepare for an uncertain future.
What You Need to Think About
Social Determinants of Health. Consider the day-to-day life of your patient. Do their living circumstances allow them to follow public health guidelines? If they become ill in the community, will they have a safe place to stay and enough money to get medicine and food delivered? In times of illness, we rely heavily on existing support networks, but everyone from outreach workers to family (including street family) may be overwhelmed and focused on survival. The person you’re providing care for may need assistance meeting basic needs such as transportation, delivery of meds, food, phones, and other supplies to support them in place. When caring for someone in a health care setting or preparing them for discharge, provide people with ways to connect virtually or by phone with support persons and chosen family. This will be especially important for people who are unable to receive visitors or who do not have their own phones.
Chronic pain, mental illness or substance use can be made worse by this pandemic. A harm reduction approach is needed to manage pain and prevent withdrawals in someone who is a regular user of opiates or stimulants. People with mental illness may be experiencing heightened depression, anxiety, or paranoia, which can be worsened by the ways that personal protective equipment makes it harder to connect with the people we care for. If you’re working with someone with a mental illness, remember that they may need more reassurance and connection. Whenever possible, try and maintain a continuity in treatment plan.
Trauma-Informed Care. Traumatizing experiences in the health care system, or past trauma that is triggered by health care settings, is common for people who experience social disadvantage. It is rare for people to disclose these experiences. Assume there may be a history of trauma and practice safe, sensitive, trauma-informed care. You may already be delivering trauma-informed care – prioritizing this approach can go a long way towards creating a culturally safe and welcoming environment, emphasizing safety and trust. Adapt your language and build on people’s strength and resilience.
Advance Care Planning. Does your patient have an advance care plan? If not, help them complete one to ensure their wishes are documented and preferred substitute decision makers are identified. It’s normal to feel apprehensive when having conversations about death and dying, but during a pandemic more health care providers may be called upon to use this skill. Advance care planning is a crucial component of maintaining autonomy and treating people with dignity, especially with a new disease where prognostication is uncertain. Approach conversations with dignity, compassion, and honesty. Many people who are structurally vulnerable or have mental illness are not unduly distressed by conversations about death and dying, but are less likely than the general population to get the support they need to make their wishes known.
As COVID-19 evolves, it serves as a reminder just how fragile life can be and of the ways in which health equity impacts all of us collectively. In some ways, it has resulted in a surge in our collective capacity to care. Let’s hope when this is all over that this remains the same and that equity-informed palliative care for the socially disadvantaged becomes the norm. See Infographic here
Additional Resources:
Guidance for People Who Use Substances on COVID-19
https://yale.app.box.com/v/COVID19HarmReductionGuidance
Trauma and Violence-Informed Care: A tool for service providers in the homelessness sector
https://equiphealthcare.ca/equip/wp-content/uploads/2019/04/TVIC-Orientation-Tool-Final-EN.pdf
We Will Have to Talk About Dying: COVID-19
https://www.openchange.co.uk/wp-content/uploads/2020/03/Difficult-Conversations.pdf
Clinical Guidance for Risk Mitigation in the Context of Dual Public Health Emergencies
Equity in Palliative Approaches to care (ePAC) is a community collaborative informed by a research program led out of the University of Victoria. Members of the collaborative work together to conduct research with local, national and international partners, and develop resources and tools, programs, and services aimed at improving access to quality care for people facing the end-of-life and who also face inequities like homelessness, poverty, isolation, racism, and stigma.
Email: equitableaccess@uvic.ca
Twitter: @access2care