Death Care Guide for New York City:
Written and Compiled by Karolina Castro,
Creator of The Color Karo platform
Death Care Guide for New York City: Coronavirus Ready by Karolina Castro is licensed under CC BY-NC-SA 4.0. To view a copy of this license, visit https://creativecommons.org/licenses/by-nc-sa/4.0
Table of Contents
Introduction. . . . . . . . . . . . . . . . . . . . . . 3
Before Death Occurs . . . . . . . . . . . . . . . . . . 4
Death Has Occurred . . . . . . . . . . . . . . . . . . 8
Body Disposition Considerations . . . . . . . . . . . . 10
Financial Assistance . . . . . . . . . . . . . . . . . 13
Honoring the Dead During Coronavirus. . . . . . . . . . 15
Grief. . . . . . . . . . . . . . . . . . . . . . . . 16
Work with a Death Doula. . . . . . . . . . . . . . . . 17
Resources Used. . . . . . . . . . . . . . . . . . . . . 18
Why this Guide Exists
Today we find ourselves in the midst of a global pandemic and we are all forced to confront death, whether it is the fear for our lives, those we love, or the lives already lost. The volume of death is unbelievable. As a result, funeral homes are finding it hard to meet the demand while also trying to keep themselves safe. Many of us are also hit with the financial and emotional stresses of facing death, especially during a pandemic. It is time for us to empower ourselves and take control of our deaths as much as we can, for our peace of mind, and for our families.
This guide is designed to provide practical support for dealing with death; before, during and after it occurs. While this information is useful for anyone, the guide is targeted at low income, Black and Brown people. Not only is the pandemic disproportionately killing people of color but we are still facing institutional violence. Rent is expected to be paid with no employment and police are still killing Black people. That being said, this guide is meant to empower people with some sense of control over their death and dying process.
In the case of Coronavirus, it is important to be patient. Funeral work is oversaturated and there may be delays throughout the process. Try your best to plan ahead if possible.
It is important to note that language assistance may be needed for those whose first language is not English. It will be indicated if forms can be found in other languages. Also, having access to a computer will be helpful as a lot of the communication under the pandemic is over the phone or computer. The MOLST form (page 5) will need a doctor’s signature. All forms can be completed regardless of citizenship status.
The guide is a living document, meaning that it will be updated periodically. It has a creative commons copyright (seen on the title page) so that others may create their own versions of the guide based on the needs of their own state or organization. All you have to do is make sure to add the copyright on your version.
Before Death Occurs
1. Open Conversation
Death is often a difficult and avoided conversation topic. It brings up fear and anxiety of the unknown, the anticipation of pain, not having time to accomplish goals, worries over the wellbeing of loved ones, and more. While it can be an intimidating topic, the pandemic has forced us to confront it. Allowing for a conversation to be had, can offer relief of those fears. If you aren’t ready to dive into those fears, that’s okay too. Consider just thinking about what you would want to happen when you die. Burial? Cremation? Do you want to donate organs? Do you want a certain poem recited at the funeral? Anything could help the next of kin in charge of your funeral arrangements. Consider taking it a step further and putting your wishes in writing (ways to do this below). When someone dies, being prepared can be a final act of care towards their survivors. Those grieving a death shouldn’t have to deal with the stress of figuring out what you would have wanted. So tell them.
2. Health Care Proxy
A healthcare proxy is a trusted person appointed to make healthcare decisions for you if you are unable to make decisions for yourself. In order for the health care proxy to become effective, two doctors must decide that you are not able to make your own decisions.
To assign a health care proxy, you simply must have an honest conversation with someone you trust, who is willing and able to make those decisions on your behalf. It is always best for you to communicate your wishes to your health care proxy beforehand. Otherwise, they will have to interpret your wishes when you are incapacitated. Decisions they will have to make include:
* whether you would want life support initiated/continued/removed if you are in a permanent coma;
* whether you would want treatments initiated/continued/removed if you have a terminal illness;
* whether you would want artificial nutrition and hydration initiated/withheld or continued or withdrawn and under what types of circumstances.
To legally legitimize a health care proxy, you must complete a Health Care Proxy Form. The cost is FREE. You do not need to get it notarized in NY State. You do, however, need it to be signed by 2 witnesses and copies should be easily accessible. You can find the form in multiple languages here.
3. Living Will
A living will is a document that allows you to leave written instructions that explain your health care wishes, especially about end-of-life care. A health care proxy cannot be named here. You must complete a Health Care Proxy Form to assign one. A Living Will can also be used to:
* leave your property to people or organizations
* name a personal guardian to care for your minor children
* name a trusted person to manage property you leave to minor children, and
* name an executor, the person who makes sure that the terms of your will are carried out.
You DO NOT need a lawyer to create a Living Will and you do not need to get it notarized. You DO, however, need to:
* sign or acknowledge your will in front of two witnesses
* declare to your witnesses that the document you are signing or acknowledging is your will, and
* your witnesses must sign your will in front of you.
Learn more about the Living Will here. *You can still make a will if you are an undocumented immigrant.
An alternative to writing a free living will from scratch, is Five Wishes® Advance Directive. It only costs $5 and comes in over 20 languages. It helps the people document their medical, personal, emotional and spiritual needs for end of life care.
4. Medical Orders for Life Sustaining Treatment Form(MOLST)
A MOLST form allows doctors to record your preferences regarding cardiopulmonary resuscitation (CPR), mechanical intervention, and other life sustaining treatments on one form as a physician order. It must be completed by a health care professional and signed by a New York State licensed physician to be valid. The form can be found here. There is only an English version to my knowledge.
This form is important because when someone is presumed dead, healthcare professionals are trained to take measures to resuscitate the body. If someone dies at home, along with the MOLST form, families should also have a Non-Hospital DNR Order. This lets paramedics know that they should not try to resuscitate the person who has died outside of a hospital or nursing home setting. Without these forms, life sustaining measures will be taken and it could potentially be traumatic for a family to witness.
Read more about Medical Orders for Life Sustaining Treatment Form here.
5. Control of Disposition of Remains
After death, the next of kin is responsible for funeral and disposition decisions unless there is legal documentation stating otherwise. In New York, next of kin is listed in the following order: spouse, children, grandchildren, parents, siblings, grandparents. However, sometimes those we are close with are not an ‘official’ family member and we would prefer for them to control the major decision of burial or cremation. If one does not name this person in their living will, filling out this form can be an alternative. The Appointment of Agent to Control Disposition of Remains form lawfully gives a person the right to control what happens to the remains of the deceased. It must be signed and dated by the decedent and the agent and be appropriately witnessed. It is available in English and Spanish.
6. Proper Documentation of Medication
In the time leading to an expected death, it is helpful for the decedent's caretakers to collect all of their medication for the records of the paramedics and doctors.
7. Call Health Care Proxy
When it seems like death is near, please notify all appropriate parties, including the Health Care Proxy so that they can make themselves available.
8. Pre-plan Funeral Arrangements
Begin researching the best funeral options for you. It is less stress on a grieving family to know what arrangements should be made. Most funeral homes do not have their prices on their websites. However, they are legally required to go through their prices with you on the phone. Do not be afraid to call up your local funeral homes and compare prices. It is always best to KNOW what you want beforehand. You can prepay for a funeral if that is an option for you. Affordable funeral options and government financial assistance will be discussed further down.
9. Collect Account Information
It is good practice for a trusted relative, friend or health care proxy to collect the