How to Have End-of-Life Conversations

Why are end-of-life conversations so important?

End of life conversations are so important because they acknowledge how your loved one wants to live their last days.

If you or your loved one is considering hospice care, planning should begin now to ensure your loved one’s wishes are met. Consider these reasons for having the conversation, even when it seems hard to do:

• This is about your loved one. They deserve to be the focus of attention.
• Most people think it’s important to talk about end-of-life care, yet only a third of them do.
• Almost three-quarters of people prefer to die at home, although three-quarters die in hospitals.

When you begin the conversation about final days with your loved one, it shows that:

• You want to hear what they have on their mind.
• Their wishes for their last days are important to you.
• Together you will plan out their final days, step by step.

When you initiate the end-of-life conversation earlier rather than later, it increases the chances that your loved one shares their end-of-life wishes. They can then pass as they hoped, in the setting they most prefer.

How do you start the end-of-life conversation with a loved one?

Prepare and educate yourself

An important part of starting the end-of-life conversation is making sure you are knowledgeable about certain healthcare topics. This allows you to plan ahead and thoughtfully approach the conversation with your loved one. Some key topics you will want to read up on include:

• Advance directives
• Living wills
• Hospice care vs palliative Care
• How to pay for hospice care

Find out what your loved one knows about advance directives

Before starting the end-of-life conversation, ask your loved one if their primary care doctor has spoken to them about advanced directives. Let your loved one know that you want to assure that their wishes and values are met if they become ill or have a health emergency.

Advance directives and living wills let medical and emergency personnel know the choices someone has made about serious issues, such as:

• Who they want to be in charge of healthcare decisions if they’re unable to make them.
• Stating if they want to be resuscitated if their heart or breathing stops.
• If they want medication, even if it causes them to lose awareness.
• If they want a feeding tube if it becomes necessary.

When you start discussing advance directives, it may naturally lead to discussing other wishes for end-of-life care. Be prepared to discuss the topics below when starting the conversation. Review The Conversation Project’s Conversation Starter Guide (PDF).

Listen and let your loved one take the lead

• As you begin discussing advance directives, actively listen to their opinion and wishes even if they conflict with your own.
• Put yourself in their shoes and try to understand why they feel the way they do.
• If they want to stop the discussion for now, ask when will be a good time to carry on.
• Suggest that you’ll check in with them in a few days as you know this can be a sensitive topic.

Test the water by learning about their end-of-life preferences

You can transition the conversation from advance directives to learning about their preferences by using examples and asking simple questions that allow them to reflect:

• Use examples like “I remember when grandpa died, you said you wished things had been done differently. What do you want for yourself?”
• If you don’t have examples to point to, you can ask them to reflect by asking
  • “What is most important to you right now, comfort or continuing curative treatments?”
  • “What are the minimum qualities of life you’re okay with?”
  • “What are your hopes and what are your fears around end-of-life?”

After you have tested the waters and have an idea of how the conversation is going, you can gently ask questions about other topics related to end-of-life, such as:

• “If you learned that you were going to pass soon, where would you like that to be?”
• “You’ve talked about pain recently. Have you thought about how you want pain to be handled?”
• “Do you hope that people will hold a service or celebration of life after you pass?”

Honor your loved one’s communication preferences

Individuals have different preferences for how they communicate their end-of-life wishes to their family and friends. Some common ways are:

• Discussing with the whole family while they are all together.
• Writing a living will, a letter, jotting notes, or sending an email.
• Sharing their wishes with one person who then passes them along to others.

Whatever communication method your loved one chooses, honor their decision.

Find out how much your loved one knows about hospice care

Your loved one’s comments may naturally lead to talking about hospice care. If not, you can open the topic by asking:

• “Have you ever heard of hospice?”
• “Did you know there are special services for people who want to focus on quality of life for their last days?”
• “Do you want to learn more about what hospice care is like?”

Tell your loved one a bit about hospice care, such as:

• It is designed to allow them to live as comfortably as possible during the last stages of life.
• There are nurses, home health aides, and other health professionals who help to assure a person is well cared for.
• The family is involved in the care, and you make decisions together.
• Medicare and most other insurance plans pay for hospice care at home.

Bring others into the conversation to help

Having others join the end-of-life conversation can be useful in many scenarios, including:

• To help your loved one learn about their condition and the choices available.
• To resolve conflicts or disagreements between family members.
• To help make the best provider decisions with your loved one.
• To have a trusted, professional third-party go over what to expect regarding health, quality of life, and life expectancy.

If you or your family are unsure about whether your loved one is still competent to make their own decisions, consider:

• Speaking with a doctor or lawyer on how best to proceed.
• One of them may be able to help you decide who can serve as a power of attorney.
• If it’s determined that your loved one is not competent to make their own decisions, they can advise you about legal guardianship.

Who should be included in the hospice discussion?

The answer to this question varies by situation. Family tension, distance, and other dynamics may need to be addressed alongside next steps planning for your loved one’s care.

Some people you may want to consider including in the hospice discussion are:

• Physicians: to discuss their recommendations and your loved one’s current state of health, including emotional and mental well-being or concern.
• Family members: to get together in-person, by phone or video chat. Appropriate family members are those that are close to your loved one and often include:
  • Spouses or partners
  • Siblings
  • Adult children
  • Grandchildren
• Social Worker or Geriatric Care Manager: If it’s unlikely family members will agree about hospice plans, it might be necessary to resolve tensions first with an outside person.
  • When this is the case, think of meeting with someone who can mediate challenges on behalf of your loved one.
  • This may be a social worker, care manager, doctor, counselor, or faith-based advisor. It’s best when they’re someone everyone trusts.
• Hospice Representative: to join the conversation now or later on.
  • Now might be the case if hospice has been agreed upon as the best next step and an agency has already been selected by the family and their loved one.
  • Later might better if the end-of-life care plan is still being discussed or if there are two or more hospice agencies to choose from and a final decision has not been reach
  • When hospice representatives are invited to join the discussion, they are:
    • A hospice social worker or admitting nurse who focuses on patient and family preparation and hospice planning.
    • A bereavement counselor or pastoral counselor if needed to ease your loved one’s or family’s concerns. This can be the case when a person’s condition quickly declines.

Communication tips for discussing hospice with family

Families vary widely in how they approach hospice discussions. Some are prepared and ready to move on with hospice planning for their loved one. Others are hesitant or at odds with how to proceed. Regardless of the situation, as a caregiver you can try to facilitate compassionate and open-hearted communication.

Set aside differences to focus on your loved one: Let family members know that the focus is on your loved one who is dying. Your ability to set aside personal issues or family tensions will be appreciated.

• Before starting the discussion, have all family members agree to put aside differences to better care for your loved one.
• Make sure everyone’s opinion is heard and valued without judgment.
• Share the same information with all family members involved so everyone is on the same page.

Make the discussion as easy for your loved one as possible:

• Discuss with your loved one if they are open to responding to questions and concerns.
• If possible, gather family member’s questions ahead of time. These can be reviewed with your loved one before a family gathering.
• Let others know if there are topics that are off limits.

Decide who will speak for your loved one if they cannot: It’s important for others to hear about their wishes and concerns for their final days. Ask if your loved one wants to lead the conversation. If they are unable to attend in person or want someone to assist them, make sure there is a point person to communicate their thoughts.

• This person is likely to be your family member’s designated primary caregiver.
• You can also consider recording their message via video or audio, if that is preferable.
• This is a good time to share notes about preferences so others are clear about your loved one’s intentions.
• They may express concern for loved ones they’ll leave behind.

Make sure all people in the discussion understand the benefits of hospice

• Send a short email around explaining the benefits of hospice care so everyone is educated on the topic.
• Clarify common misconceptions about hospice care.

How to discuss hospice with your physician

Although hospice care has been available in this country for just over 40 years, it is still not used as often as it can be. Patients often enter hospice later than what is most helpful for them and their families. You can proactively discuss hospice with your loved one’s doctor by:

• Talking about their recent health declines or a diagnosis of terminal illness.
  • Ask about the best-case scenario and worst-case scenario, continuing treatment and without continuing any treatment.
  • Share your loved one’s wishes for the closing months and weeks of life.
  • Express the need to prepare your family.
• Discussing the steps that need to be taken to prepare your home for hospice care.
• Sharing what you have learned about hospice, including the local agencies you are considering.
• Requesting the doctor’s advice and support for taking next steps.
  • It is okay to ask for an evaluation and referral to hospice if life expectancy is around six months or less.
  • Ask if the doctor is available to respond to family questions.

How to make hospice decisions together

Hospice decisions are part of end-of-life choices. Hopefully, some of these decisions have been made before your loved one is admitted to hospice.

• These choices help with preparing for hospice:
  • Selection of the person who will be the healthcare power of attorney. This is the person assigned to make decisions for someone who is unable to do so on their own.
  • Advance directives are prepared and authorized.
• You and your loved one can meet with a hospice representative who will help you with making decisions.
  • This person knows about their agency’s services and options.
  • They have a history of working with many different families, thus being able to give tips about various care topics.
  • They can help you with preparing your family and home for hospice care.
• After you and your loved one have the information you need, you can talk about choices.
  • Remember that a hospice plan can change over time.
  • Be open to hearing your loved one’s concerns. Any hesitations can be shared with the hospice provider.