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How to Plan and Discuss Your End-of-Life Care

Let others know how you want live the end of your life

By Family Caregiver Alliance

Americans are a people who plan. We plan everything: our schedules, our careers and work projects, our weddings and vacations, our retirements.

Many of us plan for the disposition of our estates after we die.

The one area that most of us avoid planning is the end of our life.

Yet, if we don't plan, if we don't at least think about it and share our ideas with those we love, others take over at the very time when we are most vulnerable, most in need of understanding and comfort, and most longing for dignity.

Big issues confront us when we think about our own death or that of someone we love. Our attitudes and beliefs about religion, pain, suffering, loss of consciousness, and leaving behind those we love come into play.  We can let things unfold as they may.  For others, it is good to plan.

Start the conversation

Talk openly with family and friends about any fears you might have, such as pain and loss of dignity. Ask your doctor about end-of-life treatment, medical decisions and advance directives. If you are already ill, find out what could happen if your condition gets worse. Talk the proper people about legal, financial and spiritual concerns.

Among the specific issues related to the end of one’s life are what medical treatments and care are acceptable, and where you want to be if you are seriously ill.

It’s easier to take control of planning in estate and finances because the content is more concrete. Make sure you have an up-to-date will, and keep insurance information, medical and long-term care and special needs policies in an accessible place.  Either give copies to a trusted relative or friend, or tell them where to find the information when needed.

You have the right to decisions about your health care.  You can appoint an agent to be your proxy or surrogate should you become incapacitated. For most people, the final days are spent in a hospital, nursing home or in their own house. This is where advance directives come into play.

Prepare advance directives

Advance directives are written instructions about the care and treatment you want if you reach the point where you can no longer speak for yourself. The most common form is the durable power of attorney for health care. A living will is a more limited type of advance directive.


Without an advance directive, your doctors, hospital staff, friends and family members will do the best they can, or a guardian could be appointed by a court. Having a guardian provides a higher degree of protection, but there is a cost for the legal proceedings and the process becomes part of public record.

Most advance directives cover life-sustaining treatment such as artificial feeding, resuscitation, antibiotics or other invasive procedures. Some ask for only palliative or comfort care, designed to manage terminal symptoms.

Choose someone to speak for you

When deciding a proxy or surrogate, choose a responsible person who shares your values and beliefs about medical care or dying.  It will be up to them, when the time comes, to decide where you will die, and arrange for an autopsy, organ donation and funeral plans.

A health care provider may refuse your stated wishes or the decisions of your proxy because of conscience or the institution’s policies or standards. The provider must inform you or your surrogate immediately and transfer to another provider should be arranged.

Federal and state laws are in place if a person who’s incapacitated had a mental illness or developmental disability.

There is much that we can plan in advance of our own death, such as where we want to be, how medical costs are covered and funeral arrangements. Advance directives must be made knowing that some day other people will follow our wishes and live with the results. For that reason our plans should, when possible, allow for flexibility and trust in the discretion of our surrogates.

National Hospice and Palliative Care Organization: Advance planning guide
US Living Will Registry

Honoring Choices (Twin Cities Public Television) 

Based on the Family Caregiver Alliance fact sheet “End of Life Decision-Making.”

By Family Caregiver Alliance

MissionFamily Caregiver Alliance is a public voice for caregivers, illuminating the daily challenges they face, offering them the assistance they so desperately need and deserve, and championing their cause through education, services, research and advocacy.    Who We Are Founded in 1977, Family Caregiver Alliance was the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care at home. Long recognized as a pioneer in health services, the alliance offers programs at national, state and local levels to support and sustain caregivers.National, State and Local Programs Uniting research, policy and practice, the alliance established the National Center on Caregiving to advance the development of high-quality, cost effective programs and policies for caregivers in every state in the country. The National Center on Caregiving sponsors the Family Care Navigator to help caregivers locate support services in their communities. Family Caregiver Alliance also oversees Link2Care, an Internet support and information system for clients of California's system of Caregiver Resource Centers and operates the Bay Area Caregiver Resource Center in the six-county San Francisco Bay Area. In that capacity, the alliance's staff social workers work closely with families caring for ill or elderly loved ones. Our services, education programs and publications are developed with their expressed needs in mind, to offer real support, essential information, and tools to manage the complex and demanding tasks of caregiving.

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