Step One in the Process of Expressing Your End-of-Life Wishes
Health tips - When it's time to determine what your wishes are for managing the end of your life, here are the questions you'll need to address, along with resources for determining your own answers.
1. Who do you want to designate to make medical decisions on your behalf when you are unable to make them?
This person, called your healthcare proxy or medical power-of-attorney, is the person who you know will make decisions the way you want them made, and who can most easily stand at your bedside, if necessary.
Your proxy will need to make decisions for you if you are in a coma, have a sudden heart attack or stroke, or suffer another debilitating event, and can't speak.
In addition to your primary representative, you'll want to designate who your second choice representative should be.
Here are some resources for making your selections:
The American Bar Association: How to Select Your Health Care Agent or Proxy
Caring Connections: Healthcare Agents, Choosing One and Being One
2. What kind of medical treatment do you, or don't you, want to have?
Should you be kept alive on a respirator (breathing machine) or with a tube that feeds you (nutrition) or provides fluids (hydration) to you artificially? Under what circumstances?
If your breathing stops or your heart stops beating, do you want to be resuscitated? Under what circumstances?
If you are in a great deal of pain, and can't make clear decisions, knowing you'll be given high doses of pain-killing drugs, do you want that pain relieved?
These are difficult questions and not easily answered. Often the answers come with caveats such as, "I don't want a feeding tube, UNLESS there is a good chance it's only temporary." Most resources suggest that the more specific the answers to these questions, the more difficult it is to determine whether the criteria are being met.
You may have very strong feelings about whether you would be want to kept alive, even if you knew the eventual outcome would be death. It's possible you might choose death sooner rather than later. Or perhaps you're very clear about your feelings but don't know how they can be expressed on paper. That's why it's so important to discuss these kinds of thoughts and feelings with others whose opinions you value and trust. You may want to sit down with other loved ones, clergy, a trusted medical adviser or even an attorney to be sure you are thinking through all the questions and potential positives and pitfalls to the answers.
Here are some resources to help you answer these difficult questions:
The American Bar Association's tool to help you determine which circumstances might be worse than death, how to weigh the odds of survival, and personal priorities and spiritual values.
An overview of hydration and nutrition from the American Academy of Family Physicians
Information about making hydration, nutrition and breathing choices from the Family Caregiver Alliance
3. As you reach the end of your life, do you want to die at home? Or is hospice care, including palliative care an option for you?
Many years ago, most people died at home because that was their only option. As hospitals become more a part of end-of-life patient care, people began fearing death in a hospital, perceived to be too sterile and impersonal. They would implore their families to let them die at home.
In more recent years, a movement toward hospice and palliative care has grown. Hospice is both a facility and an attitude toward end-of-life care, offering patients and their families death with dignity, respect, pain control and comfort. The difference between hospitals and hospice is the difference between curative care and palliative care. Curative care is treatment with the intent to improve symptoms, while palliative care is aimed at reducing pain and discomfort with the intent to reduce a patient's suffering.
Many hospitals and nursing homes offer hospice and palliative care services within their facilities. Most insurance policies, plus Medicare and Medicaid pay all or part of the treatment costs for patients receiving these services.
Since the 1990s, we hear more and more about the right to die, also called death with dignity, where people choose to die on their own terms, in their own timeframe. Laws have begun to address its legality, but not everyone is waiting for laws to be enacted.
As you make your decisions about where and how you prefer your last days to be lived, consider information from the following resources:
A Guide to Palliative Care
The National Hospice and Palliative Care Organization
The National Hospice Foundation
Making the Choice to Die: The Right to Choose Death with Dignity
4. Once you die, are you willing or unwilling to donate your organs or tissues to other people whose quality of life will be improved by their use?
Would you be willing, or unwilling, to donate your entire body to be studied in an academic medical university by researchers, doctors and students?
Many people reduce their stress about the thought of dying when they consider the possibility of improving the lives of others through organ donation or whole body donation. Helping a blind person see, providing a liver to someone with disease, or donating skin to a child who has been burned is a selfless gift that goes beyond the donor's own life.
Others object to the prospect of donation, sometimes due to religious reasons, and sometimes "just because." Questions about the point of death, when and how it is determined, give rise to questions about organ removal, called "harvesting," and at what point in the declaration of death that takes place.
Resources and more information about the questions you'll need to answer about organ and tissue donation are included in Organ and Tissue Donation - An End of Life Decision.
Once you've made these decisions, you can begin taking the next step, recording your answers in the appropriate documents. Health tips
Four Steps to Expressing Your End of Life Wishes
Ask the right questions and determine your answers.
Record those answers in the appropriate documents.
Discuss your decisions and your wishes with your loved ones and others who need to know.
File or store any paperwork or electronic files you have produced, and distribute copies to the right people.