If you are someone who is living with a terminal illness, and you contract COVID-19 (coronavirus), hospice and palliative care will likely continue to be available to support you in reducing suffering in your final days. Likewise, in states where medical aid in dying is authorized, doctors are still supporting capable adults with a terminal diagnosis who qualify for this option.
Unfortunately, many patients hospitalized for COVID-19 are likely to die in a hospital isolated from their loved ones. Below are some tips for creating greater connection, and a more compassionate death in the age of COVID-19.
Avoiding the Hospital
With the expansion of telehealth, more patients can receive quality care to control their symptoms in the comfort of their own home. Choosing this option typically requires you to have someone, perhaps a loved one, friend or neighbor, who is able to assume the role of primary caregiver for the duration of your disease.
If you want to avoid aggressive treatments and remain in your home, contact your healthcare provider now to find out what your options are. You can ask:
- Can I get non-invasive respiratory care at home? What kind of care will that be?
- Will I be able to get pain and symptom management from home?
- How will my pain medication be prescribed and delivered?
- Will I be able to get oxygen at home? How will it be delivered?
- Can I be referred to a palliative care doctor?
- At what point will I be referred to hospice care?
- How quickly will I be able to enroll in hospice if my symptoms progress rapidly?
In the event that hospice care is not available, your doctor may be able to prescribe pain and symptom management (including oxygen) or refer you to a physician who can arrange for palliative care in your home, if such care is offered in your area. If you are able to remain at home with a COVID-19 diagnosis, doctors will still advise that you self-isolate from other family members, who will be counseled to come into your room only when necessary. This is important for their safety.
When You Are Sick
Healthcare professionals and loved ones alike are doing everything possible to try to ensure people are not alone when they die. For example, in the hospital, healthcare providers are working hard to be with the patient during those final moments and connecting them to their loved ones. Here are some ways people are saying their goodbyes to their loved ones:
- Video conference. If you aren’t able to use the phone or computer, ask the person who is caring for you (a healthcare provider in the hospital, your hospice provider at home) to make the call on your behalf and hold the device to you for speaking.
- Window visits. Ask your loved ones to visit you through your window. To make the time last, ask them to create cards and share posters with you.
When You Are Well
Most people envision that they will die at home, surrounded by their loved ones. There is a certain intimacy to the moment that brings about closure. Families come together, learn what is important to each other and say goodbye.
These are precious moments that help to make a difficult time a little bit better. Those who have a severe case of COVID-19 are robbed of this precious goodbye with their loved ones. For many, the last time they see their families in person is the moment they leave for the hospital. That’s why we encourage you to do a “life review” now, and create closure while you can. There are several ways to do a life review:
- More simply. Talk with your loved ones, tell them stories, or share personal moments.
- More formally. Complete the Stanford Letter Project, which gives you a structured way to examine your life, acknowledge important people in our life and seek forgiveness if needed.
Regardless of the option you choose, take the time to say what’s important to you before you leave for the hospital. There is no harm in sharing these sentiments now, even if in the end you recover and return home.
Memorializing Your Loved One
During the COVID-19 pandemic, social distancing is making a traditional funeral impossible, depriving families of that intimate time to grieve together. There are options that allow you to recognize your loved one and bring closure to their death, particularly if you were not able to be there in person:
- Funeral Homes. Many funeral homes continue to offer services that still honor social distancing. They may offer:
- Traditional services as long as the gathering is fewer than 10 people.
- Video recording or live-streaming services. These can be public on the funeral homes’ Facebook page or website, or made private and only accessible to those with the link that can be shared with friends and family.
- Private memorials. Many people are planning their own services:
- Video conferencing with tools like Zoom or GoToMeetings.
- In-person gatherings scheduled for a point in the future when it is safe to gather.
For more information on memorializing your loved one in this challenging time visit the Pandemic Care Guide from Oregon Funeral Resources.
From Compassion & Choices:
- COVID-19: Understanding Your Options
- COVID-19: Using Telehealth to Reduce Your Risk
- COVID-19: Advanced Care Planning
- COVID-19 Addendum to Advance Directive
- COVID-19: Impact on Underserved Communities
- COVID-19: Spanish Language Toolkit
- Plan Your Care Resource Center
From Other Organizations:
- Grief and Loss, National Hospice and Palliative Care Organization
- COVID-19 and the Grief Process Psychology Today
- Pandemic Care Guide Oregon Funeral Resources
From the Centers for Disease Control and Prevention (CDC):