Questions that may help start a conversation about end-of-life preferences

Starting a conversation about hospice and other end-of-life care preferences with loved ones may feel uncomfortable, but knowing how someone wants to die, how much medical intervention they want, and where they want to die is important. Learn more about hospice and palliative care here.
 
Knowing these things and more can help ensure that a person’s wishes are met. It critical to learn about care options and communicate preferences about care with medical professionals before significant physical or cognitive impairment prevents a person from making their own decisions. And it is better to be proactive than to wait for a doctor or nurse practitioner to provide direction.
 
Unknown care goals, for example, can delay access to hospice care, resulting in hospice care beginning when someone is just days or hours from death. This scenario happens far too often in the United States. Misconceptions about hospice care are well-documented and prevent open discussion among patients, families, and medical professionals. The result is unwanted, unsuccessful care and hospitalizations instead of months of hospice care that could have provided symptom management to the patient, time for reminiscence, support for family, and death at home, which is where most Americans want to die. Learn about the myths and truths of hospice care here.
 
To help start the conversation, HFA provides a list of questions below that can help guide a productive discussion and inform care choices and decisions about care. 

• What do you value most about your life?
• If you were diagnosed with an illness that could not be cured, would you still want to pursue every possible treatment, realizing that some could negatively affect your quality of life?
• Do you imagine wanting to stop curative efforts if they were to be unsuccessful?
• If you were unable to eat or drink due to a terminal illness, would you want artificial nutrition (often called tube feeding) and hydration (intravenously) even if it could cause complications and might not help you live longer?
• Understanding that cardiopulmonary resuscitation (CPR) could result in broken bones and other medical problems, would you want it if you were dying from an illness and were extremely frail?
• How do you feel about an extended hospitalization or extended time in a nursing home?
• Do you want to die in your home?
• How much pain is acceptable to you?
• Would you want to be pain-free even if it meant trading comfort for wakefulness or alertness?
• Who do you want around you when you are dying?
• What decisions regarding care do you want to entrust to others and who do you want to designate to make decisions?
• Have you shared your care preferences with that person and taken necessary steps to ensure they are recognized as a healthcare proxy, sometimes also known as a medical power of attorney, substitute decision maker or spokesperson?
• Do you want a funeral, memorial service, or obituary?
• If you want a funeral or memorial service, what music would you want; who would you want to speak; are there passages from your faith beliefs, poems, or other readings that would be meaningful to you?
• Would you want your body to be buried, cremated, donated to science?
• If you had organs that could be donated to help others or science, would you want to donate them and have you made those wishes known?

 

More ways to start the conversation

 
There are additional (and some that are even enjoyable) ways to start the conversation about end-of-life preferences that been shown to help guide decision making and conversation. Hospice Foundation of America is actively involved in national research surrounding some of these methods. Some examples are:
         

• Watch the PBS Frontline documentary Being Mortal with loved ones.
• Play the Hello game, available from Common Practice, which can provide a way to easily discuss issues that are difficult to bring up.
• Complete the Five Wishes booklet with a loved one, which will lead to conversations about care preferences.
• Use the "Conversation Starter Kit” with tools and tips for end-of-life care planning and decision making that be found at theconversationproject.org.
• Play the Death Deck, a card game that includes multiple choice and open-ended questions around death.
• Ask a healthcare professional to speak frankly about prognosis and options for care; a physician, nurse, or social worker should be willing to share information, consultation, and provide a referral to hospice or palliative care if it is appropriate and desired. For those with Medicare, documenting your care preferences with a physician is a covered benefit.

 

Documenting the conversation 

Documenting care preferences is also important, and states have varied laws about how care goals and preferences must be documented. Some people may find it easier to record their preferences and share them with family or friends in a living will, dated letter, an advance care directive, or even an email, rather than discussing them in person. Some states, healthcare systems, and companies that specialize in end-of-life planning store this information, with the goal of it being available when needed. It is also important that a healthcare provider, family member, or healthcare decision maker knows about the document and how to access it. 

Learn more about documenting care preferences here.

Remember…

 
A person’s personal and cultural history, including their faith beliefs, may influence care decisions and multiple conversations may need to occur during a person’s lifetime or illness. Priorities, circumstances, and health status may change.
 
As with any major decision, it is best to make these decisions and have these discussions when a health crisis is not occurring, but even if it does not seem like the ideal time, it is better to have a gentle conversation if possible. Changes to both oral and written care goals can be made as long as someone is competent and can communicate. 

 

What's Next 

How to access hospice care?
How to choose a hospice provider?
17 questions to ask a hospice
What is palliative care?
What are Advance Directives?
How to prepare for hospice?
How to pay for care?