End of Life Planning in a Pandemic

Rapid developments and the unprecedented nature of this pandemic make understanding and preparing for it dizzying. What has become clear over the past two months is that the death toll is incredibly high and that a majority of those killed by the virus are over the age of 60.

“The grim reality is that for the elderly, COVID-19 is almost a perfect killing machine,” American Health Care Association CEO Mark Parkinson recently told Alex Spanko at Skilled Nursing News. Even as our elders are targeted by this virus, so too are younger individuals, some who knowingly or not have preexisting conditions like diabetes, heart disease, and lung disease.

Mortality is hard for us to get our heads around—which makes planning for any eventuality difficult. I typically advise families to complete their end of life planning long before a crisis requires it, but this pandemic has run out our collective clock. The crisis is now and COVID-19 has made death our daily conversation. 

Even if you remain uninfected, there is a great chance that every one of us will lose someone we know. Talking to your closest loved ones about your end of life decisions will help you get the care you want—and importantly, it will help your loved ones to know how to make decisions on your behalf, a huge comfort in times of uncertainty, grief, and crisis.

Use your time in self-isolation to organize your primary documents and information. You can use a file box or prominently-marked cabinet drawer in your home to store the following items:

Collect your financial information, including: 

* bank account numbers, both checking and savings

* check books

* insurance policies

* investment account details 

* safe deposit box keys

* Social security card and other identification like birth certificates and passports

* Utility and other monthly billing information 

* mortgage, deed, or lease for your home or residence

* vehicle title

* Internet account numbers and passwords, including subscriptions and email accounts

Include a list of important contacts with this collection, including phone numbers for family members, your lawyer, doctor, and financial planner, pastor or priest, and preferred funeral home.

Also include the following documents:

  • Estate Plan 
  • Advance Directive
  • Funeral or Memorial Directions

Estate planning is the term for a set of documents generally referred to as a Will. The documents vary by state (links to state documents can be found here). 

In New York, for instance, an estate plan includes a series of documents that perform several tasks: the designation of a person who will make medical decisions on your behalf, the medical proxy; the designation of a person who will make financial decisions on your behalf, the Power of Attorney; a list of your assets; a list of your beneficiaries; and your last will and testament, a narrative of your wishes. (You can access the New York State forms here.)

An Advance Directive is a document (sometimes called a living will) that will help you to think through and record your medical wishes. Like Estate Planning documents, these forms vary by state (and in some cases also allow you to designate a medical proxy). The National Hospice and Palliative Care Organization also provides state-specific forms here, which I recommend using.

Electronic notarization tools like docusign.com and notarize.com will allow you to notarize these documents remotely.

Don’t let notarization deter you: A majority of states allow electronic notarization (find out here if you live in a state that does) but even if your state does not, don’t let that deter you from filling out the forms and discussing them with your family members. These conversations—and in a time of crisis, these forms—will go a long way toward alleviating alarm and anxiety.

If you spend time in more than one state, fill out the advance directive for both; some states do not recognize forms from other states.

Should you die, what are your wishes for your body? Use one side of a blank piece of paper—have a loved one assist you if writing is difficult—to record what you would like done with your body. Include this document in the drawer or box where you keep your will and other information. The National Funeral Directors Association website lists options to consider. Would you prefer burial (and if so where and in what type of casket) or cremation (and if so, what type of urn or box would you prefer; how would you like your ashes to be disposed)? 

On the other side of this paper, write down how you would like your friends and family to honor your memory? Are there songs or poems that have meaning to you? Who would you like to sing or speak? Your memorial need only adhere to traditional ceremonies as much as you’d like it to. 

The NFDA provides a helpful checklist that will guide you and your family through the process of making arrangements, including requesting a death certificate from your state’s Department of Health (or its equivalent; you can find a list here) and writing an obituary (resources on how to do so are here and here). 

Consider, for the sake of the environment, green or natural burial options. (You can access the Green Burial Council website here.)

Talk about your wishes with your loved ones. Often, the surest way to have your medical and end of life plans followed is to have your family agree to honor them. It will save them uncertainty about your wishes, it will give them more space to grieve, and it will prevent any disagreement among your family members.

***

Caring for an ill loved one at home is difficult but may be necessary during this pandemic. It is anticipated that hospitals may be too crowded to treat all patients. The WHO has provided guidelines for those who have an ill family member in their place of residence. Their guidelines include details on how to seclude the infected person, how to prevent caregivers from being infected, and what medical supplies will be necessary, although access to all medical supplies seems increasingly unlikely. (Click here and scroll to “Home care for patients.…”)

Advocating for a loved one in a hospital or institution will be complicated by pandemic-specific limitations placed on family member visits, made either by the facility or the state. In some cases, exceptions are being made for those residents who are on hospice care… but we have no reason to believe that this will remain the case.

Stay in touch with your loved one with video chats and calls. Or if your loved one can no longer communicate, connect with a staff member, hospice nurse, or fellow resident for regular updates.

If a palliative care team exists in the facility, seek them out. As Jennifer Moore Ballentine, executive director of the California State University Shiley Institute for Palliative Care, recently noted, during this time of crisis, palliative care can provide “quality of life, discernment of patient goals, advance care planning, pain and symptom management, and support for caregivers over protracted trajectories.”

Aid in Dying—the highly regulated procedure that allows terminal patients to receive lethal doses of medication in order to hasten their death—is currently legal in nine states. Compassion & Choices, the largest aid in dying advocacy organization in the U.S. has information on each state here

Valerie Lovelace at Maine Death with Dignity, writes, “If you’re a patient, it’s important when having a conversation with your physician that you ask directly, ‘Will you fully support my decision to qualify for medication under the Maine Death with Dignity Act when I am ready for that? Will you write my prescription if/when I do qualify?’

And you should receive a direct answer in response.” If the doctor will not comply, you should ask for a referral to a doctor who will. 

Because COVID-19 moves so quickly, it’s difficult to imagine a scenario in which many patients in states like Maine, where aid in dying is legal, will be able to complete the steps required to receive it. 

Compassion & Choices also provides robust tools and instructions on how to plan your end of life care and organize your estate.

Rationing is common practice in health care—in the U.S. we ration care according to patient income or class—but we will increasingly see new factors like age, underlying illnesses, and location factor into medical treatment decisions as the pandemic ramps up. 

In this pandemic scenario, some nations are experiencing the inability to provide respirators and other critical care to all patients. Italy has, according to some reports, decided to not use precious resources to treat those over 80. An Italian economist has been accused of suggesting that the elder population be “culled” to save money. Medical ethics dictates that our social obligation is to protect the individual wishes of the patient—but triage scenarios, like the one we’re in, often establish other priorities. 

Based on the experiences of other countries, we can assume that most of those who die from COVID-19 will do so in facilities, but it is also predicted that hospitals in the U.S. will become so crowded that they are unable to admit all of our ill patients. As well, rural communities across the U.S. are underserved by hospital care, often living long distances from a hospital. It is reasonable to expect and plan for the deaths of some at home.

A home death has already been recorded in Italy; local officials were confused about how to collect the body of the deceased, the sister of Luca Franzese, and so he remained in their home with her body for an extended period of time. He posted his experience on Facebook.

The National Hospice and Palliative Care Organization has asked for a disaster waiver that would initiate coverage of hospice and palliative care during the emergency. As of this writing, it has not been approved. But it is conceivable that some hospice access will exist in areas of the country, either at home or in facilities, if the program is adept at managing infectious diseases. Should your loved one die at home with hospice care, the staff will guide you and your family through the process. 

Should your loved one die at home without hospice care, you will need to protect yourself while making some simple efforts to preserve the body until it can be collected.

Amy Cunningham, funeral director at Fitting Tribute Funeral Services in Brooklyn, New York, suggests that you and your family “make ceremony on your own,” by spending time with the body until it is taken away. Other countries have postponed funerals until after the pandemic has subsided; at this time, the U.S. has not.

Cunningham’s advice for caring for the body includes, immediately after death, placing a rolled towel under the jaw of the deceased to close their mouth (once the jaw sets it can be removed). Place a mask over your deceased loved one’s mouth to prevent the spread of infection and wear gloves and protective clothing when in contact with the body. It is believed that the greatest risk of infection from a COVID-19 patient is immediately before death.

Gently bathe the body, without moving it excessively or making it too wet. Swaddle it first in plastic and then in a bedsheet, turning it as little as possible. 

The virus dies when the body dies, but because little is yet known about the effects of COVID-19, the National Funeral Directors Association recommends using every precaution when preparing or touching a body. It has also advised that regular funerary practices are acceptable: embalming, cremation, viewings and all types of services, so long as efforts to prevent infection are taken.

If for any reason—fear of contamination, overwhelmed municipal services—the removal of your loved one’s body is delayed, Cunningham suggests opening a window to keep the body cool and applying ice (in order of effectiveness: dry, block or cubed; use whatever is available) to the neck and torso of the body.

Contact your local funeral director or medical examiner. (You can find your local medical examiner by searching the internet for the name of your municipality/town/city and “medical examiner.”)

If necessary, a memorial service can be held online to accommodate quarantined or distant family and friends. Tribucast, for instance, is an online service that will help you memorialize your loved one. 

***

For most of human history, we have cared for our dying loved ones at home; it is only in the past century that death has been professionalized, undomesticated. Death care is a skill we have collectively lost. COVID-19 will almost definitely change our familiarity with death’s ancient ways.

We’re about to face very challenging times. Without government direction, we’re on our own, so stay informed, stay aware, and be thoughtful about your actions and reactions. Reach out to those around you, to your family and community for support. 

 

Ann Neumann is author of The Good Death: An Exploration of Dying in America and a contributing nonfiction editor at Guernica magazine. Neumann writes the column “Drug Money” on pharmaceutical greed for The Baffler. She has written for The Guardian, Harper’s magazine, The New York Times, The Washington Post and other publications.

Because understanding of this pandemic and virus is constantly shifting, the information here may quickly become outdated. Check with primary sources for current protocols. I will endeavor to update this document as things develop—and I welcome suggested edits and inclusions from readers!

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