COVID-19 and the Black Community
People who have chronic medical conditions are more likely to become very sick if they get COVID-19. According to the Center for Disease and Control Prevention, ethnic and minority groups are at an increased risk for developing COVID-19 and dying. Many of these risks are linked to inequities and social determinants of health. Some will recover with hospital care, but even with ventilator support, many will die. During this time, we are encouraged to “think about what you would want if you became very sick.” This is a challenging topic and an even more difficult conversation to have. Discussing your wishes with your loved ones and healthcare providers, early, before a medical crisis happens may help to make it easier to make medical decisions should the time come.
Palliative Care
People living with chronic illness are at a high risk for getting COVID-19. This is the population treated by palliative care. Palliative Care focuses on having a plan for your future healthcare based on your values and what matters to you. Palliative care is specialized medical care for people living with chronic medical conditions. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve the quality of life for both the patient and the family. Palliative care is provided by a specially-trained team of doctors, nurses, and other specialists who work together with the patient’s other doctors to provide an extra layer of support. Palliative care is based on the needs of the patient, not on the patient’s prognosis. It is appropriate at any age and any stage in a serious illness, and it can be provided along with curative treatment.
Like palliative care, hospice provides comprehensive comfort care as well as support for the family, but, in hospice, attempts to cure the person’s illness are stopped. Hospice is provided for a person with a terminal illness whose doctor believes he or she has 6 months or less to live if the illness runs its natural course.
Racial Disparities
Despite the benefits of palliative care and hospice, disparities in the access to care exist. Black patients are significantly less likely to access hospice or palliative care in the final six months of life compared to their White peers, regardless of the cause of death, according to new research published in JAMA Network Open. This information emphasizes healthcare disparities limiting access to high-quality end-of-life care for the Black community.
You and your loved one may not be in a situation to discuss hospice or palliative care but knowing what it is and what is offered may inform medical decisions in the future. Sharing your wishes about the care you would want should you become progressively ill is a good start.
Having the Conversation
The Conversation Project is a helpful resource for starting the conversation early about wishes for care through the end of life. The conversation project acknowledges that we are in a challenging time. Many things are out of our control. But there are some things we can do to help us be prepared, both for ourselves and the people we care about. Getpalliativecare.org shares three action steps of preparing a medical care plan (please see below). Visit important COVID-19 tips and information for more information and resources.
Your Medical Care Plan: Three Action Steps
- Choose a Medical Decision Maker.
- This person will speak for you if you cannot speak for yourself because of your condition. If able, choose a back-up medical decision maker.
- They can make sure your doctors know about the care you want.
- Keep their phone numbers on hand.
- A good medical decision maker is someone who:
- Can talk to the doctors for you in person or by phone and knows your wishes about what is best for you.
- You trust to follow your wishes about the care you want and may not want.
- Let your medical decision maker know they were chosen.
- This website can show you how: prepareforyourcare.org.
- Share Your Wishes About the Care You Want.
- Think about what is most important in your life? Family, pets, hobbies, etc.?
- If you know what you want for your medical care, share this now.
- Talk with your family, friends, and medical providers about the care you want.
- This website can show you how: prepareforyourcare.org.
- You can share what care you want by phone and/or a selfie video. You can also talk to others by video using https://zoom.us/ or Facetime.
- Consider an Advance Directive.
- This form allows you to name your decision maker and write down what you want for your medical care as guidance if you cannot speak for yourself because of your condition.
- If you have an advance directive, find it, review it, and share it.
- To get a form go here: https://prepareforyourcare.org/advance-directive.
- It is OK if you can’t sign it or get witnesses right now.
- Reading it can still help you learn a lot about what care you want.
- Filling out parts can still help your family and providers know more about the care you want and may not want.
- You can scan/fax (the most secure), email, or even send pictures of the form from your cell phone to those you trust.
Shaunna Siler, Ph.D., RN, CHPN