4 Questions to Consider When Preparing for the End of Life

Woman sitting by her father's bedside at hospital

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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 to help you determine 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 whom 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 have experienced a debilitating event and can't speak. In addition to your primary representative, you'll want to designate who your second-choice representative should be. Caring Connections, for example, provides tips on how to select your healthcare agent.

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 ventilator) or with a tube that feeds you or provides fluids to you artificially (feeding tubes)? If so, under what circumstances would you want to have those?
  • 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, do you want that pain relieved by receiving high doses of pain-killing drugs?

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 are, the more difficult it is to determine whether the criteria are being met.

You may have very strong feelings about whether you would want to be 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.

To help you answer these difficult questions, check out the Family Caregiver Alliance's website, which provides information on how to make choices regarding hydration, nutrition, and breathing for those with advanced illness.

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 became more a part of end-of-life patient care, people began fearing death in hospitals, perceiving it 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.

Over the years, we've heard more and more about the right to die, also called ​death with dignity, which means people get to choose to die on their own terms, and in their own timeframe. Laws have begun to address the legality of this, 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, you may want to check out the information on the websites of the National Hospice and Palliative Care Organization and the National Hospice Foundation.

4. 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 find their stress about the thought of dying to be reduced 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 a 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.

Once you've made these decisions, you can then take the next step, and record your answers in the appropriate documents.

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