Resources

Dying Wish

A documentary about dying at home, the power and benefits of hospice, and a doctor’s decision to stop eating and drinking and die with grace.

This film has featured twice at the National Hospice and Palliative Care conference and is directed by Karen van Vuuren, executive director of Natural Transitions. More at www.dyingwishmedia.com

Advance Health Care Directives

Advance Directives are documents that indicate a person’s wishes when they are not able to make medical decisions for themselves. This can happen within various time frames, ranging from suddenly, when unconscious after an accident, or slowly over time, with dementia. Having these forms takes a burden off family and friends because you have made your wishes clear ahead of time. It can reduce anxiety as well as arguments during a time of distress.

Since we all know we will die, but we’re uncertain about when, anyone over age 18 should have these forms if they want to make sure their wishes are followed.  After age 18, your parents do not have automatic legal rights to determine your care. And with many divorced families, disputes over care can escalate.  Of course, advance directives become absolutely essential when someone is diagnosed with a serious disease.

Different states have different requirements for advance directives forms.

The first step, however, is HAVING “THE CONVERSATION.”  The National Health Care Decisions Day has posted this video as a reminder of the steps towards that goal.

 

Common Advance Directives Forms

Medical Durable Power of Attorney 

This document indicates the individual who will have rights to make medical decisions for you if you can’t decide yourself, due to accident or illness.  This person (Agent) is someone you talk with about what you’d like done or not done for you, but even more importantly, what you value most about your life.  Sometimes specific wishes aren’t as important than an understanding about your values around trauma and death. We recommend that you attend a workshop or class by local hospice or other groups to learn more.  Caring Connections has forms for each state, but obtaining form is only the first step.  Another comprehensive resource is The Iris Project.

 

Instructions for the Medical Durable Power of Attorney

Having “the conversation” with family members about your wishes ahead of time may save heartache late. But some say it’s evern more difficult to discuss death and disability than to talk to your teenager about sex.

You might write out specific things you don’t want to happen.  The normal mode of medical care is to do absolutely everything to the very end, unless that’s against your wishes.  Then a persistent and assertive Agent can work to honor your approach to your care.  An informative resource to learn about choices is:  Hard Choices For Loving People by Hank Dunn, a hospice chaplain who explains the facts and lets you (or your Agent) decide.

An Ethical Will shares your deepest values and what you want your loved-ones to know if you were to die suddenly. It is a Judeo-Christian tradition, practiced today by anyone who wants to share their values in a spiritual legacy with their loved ones. For information about that see www.ethicalwill.com

Advance Funeral Directives- The Medical Durable Power of Attorney does not necessarily cover who decides what happens to your body after you die.  You can indicate your wishes and override family disputes about what will happen by completing this form.  For more information about funerals in general go to www.funerals.org

 

Hospice

Hospice is a forerunner in the movement for conscious, holistic approaches to end of life, humanizing the dying process.

In the US, hospice providers work as a team to care for those with terminal diagnoses.  A hospice physician, social worker, spiritual counselor, nursing staff and volunteers provide holistic care that emphasizes pain and symptom management to provide optimal quality of life at end of life.  Hospice is a support to the entire family, the patient and the caregivers.  Hospice patients often improve once they are admitted to hospice care, and may even live longer and die more peacefully.  The hospice team can visit patients in their own home, or they can provide care for the terminally ill who reside in care facilities.  Some hospices have their own “hospice care facilities” for the dying.

Who is eligible for hospice?

Patients whose physicians are able to refer them to hospice because their illnesses are incurable and it is believed that they could die within six months.  Patients may re-qualify for hospice, periodically, if they are still declining, after the six months have elapsed.

 

 

 

 

Unfortunately, many people access hospice very late in the dying process. Hospice can do more to support the family when “the team” can help at an earlier point in the terminal phase.

Hospice is nationally available.  There are often a number of hospices in your area and it’s a good idea to interview a few to find the right fit.

Families who choose the support of hospice and who are more connected to the dying process may find it easier to step into the role of caring for their loved-ones after death too.  Here are two useful umbrella organizations, which are national resources for hospice information.


The National Hospice and Palliative Care Organization at www.nhpco.org

The National Association for Home Care and Hospice at www.nahc.org