How to Talk With Your Family About End-of-Life Care
Talking about end-of-life care is never easy. For many families, the discussion is one of the most emotional of their lives. Mentioning hospice care, and making important decisions that will need to be made in the end days, can be awkward.
Many families shun this topic due to its difficulty. They wish to have clarity when the time is right. However, during a serious health incident, families may be compelled to make decisions that they have to make very rapidly, sometimes without knowing what their relative would want.
It may be a conversation that brings peace of mind, with it happening early. It can assist families to feel better prepared, minimize confusion and guarantee that a loved one’s wishes are honored.
This article provides general tips and information about starting an end of life conversation, topics of conversation and the assistance provided by hospice care teams.
This article is intended for general educational purposes only and in no way is intended to constitute medical or legal advice. If you have a particular situation, contact your loved one’s doctor and/or the hospice care team or a knowledgeable provider.
Why End of Life conversations are important?
End-of-life conversations are important for they provide an opportunity for people to communicate what is important to them. These conversations assist families to grasp a loved one’s wishes and values, their fears and their preferences before the crisis.
These discussions could leave family members in a stressful situation to make decisions without them. They might think that they made the wrong decision or be not sure about the intent of their loved one.
Families feel more confident to decide when wishes are talked about in advance. They can concentrate on comfort, dignity and time shared rather than uncertainty and regrets.
These discussions aren’t just regarding medical care. They’re also about love, respect, family connections, and respecting the individual’s values.
Despite their best intentions, why do families have trouble with these conversations?
Some families avoid talking about the end of life as it is a difficult subject to discuss. Discussing death can seem impossible, despite the fact that it is to help and protect the loved ones.
Family members may have concerns about how this could make their family member upset. Some people don’t know where to start. But cultural beliefs, family dynamics, religion and upbringing can also affect the conversation comfort level.
It’s understandable that you try to avoid the topic. However, a risk that can be avoided does not go away. A well planned discussion can diminish fear and provide a better understanding of what is most important.
The aim is not to have a prefect conversation. Start with honesty, patience and compassion.
At What Age to Discuss End-of-Life Desires?
Talking about end of life wishes is best done in advance of an emergency. The dialogue should occur when your loved one can clearly convey their thoughts, values and preferences.
The conversation might be more difficult if it occurs at the end when things suddenly fall apart, if a child has to go to the hospital, or if the decision is made in a hurry. Emotions are elevated, time is limited and family members can be overwhelmed.
The conversation to begin can be at any time of the year, but good opportunities might be:
Nevertheless, the information about the diagnosis is quite severe.
After a hospitalization
When the health or daily functioning changes
After the passing of a friend or family member
At a significant age or life event.At a significant age or life event.
If someone wants to straighten up and clean house.
Even if your loved one is already ill, it is a good idea to have the discussion. Better late than never.
Strategies for starting and maintaining a conversation.
Conversations can be difficult to start. It is not necessary to be all-knowing before you get started. Just gently open the door.
May it help to begin with love and reassurance. Tell your loved one that you aren’t talking about quitting. It’s about responding to their wants, which the family can accommodate.
You might say:
I love you and I want to be sure we are both clear on what is important to you.
When someone’s health status changes, I want to know how to help them in the manner that they would prefer.
“It’s hard for me to discuss, I suppose, but I feel like it would be beneficial to our family to know your wishes.”
I had been thinking of planning ahead, I asked myself, what would you want for that as well?
I don’t want anyone ever to have to guess about your care.”
This discussion might not be completed in one sitting. That is okay. For some families, there are multiple mini-conversations that will take place over time.
What Should Families Discuss?
What to do with the body and what matters to the individual should be both considered in end-of-life discussions. A medical wish is significant, but families also ought to know a bit about what brings comfort and peace and meaning to their loved one.
It can cover such important topics as:
Identifies where to seek treatment.
A large number of people have opinions on where they would like to receive care if they do not feel well. Those who would like to stay home. Other people might perhaps feel a lot better staying in the institution or the hospital.
A knowledge of this preference, gained early, can assist the family and care team to plan accordingly.
What Does Comfort Mean to Them?
Comfort can mean different things to different people. To one, it can be the absence of pain. On the other hand, it could be having the ability to communicate with loved ones while awake. For another, it can be spiritual care, listening music, prayer, privacy or keeping company of the loved ones.
Understanding the meaning of comfort to your loved one is helpful in providing care.
What they do or don’t want to take from treatment.
People often have definite preferences when it comes to treatments at the end of life. They may be thinking about hospitalization, CPR, feeding tubes, breathing machines or other treatments.
It might be difficult to make these decisions, but it may reduce confusion later.
Decisions for those who can’t talk for themselves.
A critical element of planning is deciding on a trusted individual to make the health care decision for a loved one if they become unable to speak for themselves.
The person can be referred to as a healthcare proxy, healthcare agent, or durable power of attorney for healthcare in various states and documents.
The person chosen to care for the loved one must be receptive to their wishes and know what they had said.
What They Want Their Family to Know
Conversations around death and dying can also provide an opportunity for personal and emotional messages. A loved one might wish to leave a message of thank you, forgiveness, remembrance, directions, or final thoughts.
These are valuable for the patient and family. They can provide comfort, closure and connection.
Advance Directions and Planning Papers.
Advance directives are documents that tell the health care providers what a person wants if he or she is no longer able to communicate later. It can be used to assist doctors, family members or care teams in a severe medical situation.
Depending on the state, an advance directive can contain a living will, healthcare power of attorney or other paperwork.
It’s essential to speak with a person, but it’s better to jot the wishes down. Make sure to provide copies to the appropriate individuals, such as physicians, medical agents, and other important family members.
Families should consult with a knowledgeable professional to determine which forms to fill out, as regulations are different from state to state.
What if your loved one doesn’t want to talk?
It’s normal to avoid end-of-life discussions. At times they may feel uneasy, fearful or feel that discussing death is a sign of surrender.
Always be careful not to insist too much in the moment if your loved one doesn’t want to discuss the subject. Rather, provide them opportunity and revisit the discussion at another time.
Some useful strategies are:
Beginning with more basic inquiry
Telling them why you are doing so: because you want to respect their wishes
Instead of addressing the need to become proficient in helping, talk about how to become proficient in the understanding.
Request a doctor, social worker, chaplain or hospice medical staff member to assist
Knowing it may be held over incremental parts of a time period
Build trust, not pressure!
A Hospice Care Team can help just about anyone.
Hospice care teams have been trained in having these types of conversations with families. Social workers, chaplains, nurses and care coordinators can support families in discussing their fears, aspirations, plans for care and what happens next.
Hospice support may prove particularly useful when family members disagree, are overwhelmed, or don’t know where to start.
We know that these conversations are likely to be emotional at Canestro Care Hospice. They are treated with compassion, patience and respect. Our aim is to support the family, respect the patient and listen to their wishes.
Common questions and answers about having end-of-life conversations.
When is it appropriate to discuss end-of-life care?
The optimal moment is PRE-Crisis. The discussion is best done at a time when your loved one can clearly communicate their desires. Even if it’s too late to start, it’s never too late to start.
What does an advance directive mean?
An advance directive is a legal document containing a person’s opinions about their health care in the event that they can no longer make their own decisions in the future. It can also designate a trusted individual to make healthcare decisions for them.
If my family members disagree on care options, what can I do?
It’s normal to have family disagreements during stressful times. A written list of wishes can help to prevent conflicts. A hospice social worker, physician and/or care coordinator could also provide guidance for the conversation.
Does hospice have resources to help with these conversations?
Yes. Hospice staff may wish to engage in discussions with the patient and family about goals of care, comfort, emotional and spiritual needs, and planning.
Now what should we do?
Record wishes discussed, complete as needed, share copies with as appropriate, and continue the discussion as needs evolve.
The Conversation Is an Act of Love
Discussions about end of life are not acts of surrender. It’s about to ensure your loved one is heard, respected, and cared for in line with their wishes.
Such conversations can be challenging but can also be very strengthening to families. They help people express what is important to them and enable families to make decisions without fear, in clarity.
No family is perfect at managing this. The key is going to start.
If you don’t know where to begin, Canestro Care Hospice can help you out. We provide hospice care that is compassionate and aimed at comfort, dignity and peace to our team and to our patient and family.
This pamphlet provides information on hospice care.
Canestro Care Hospice is available for patients who may need hospice or for healthcare providers that would like to refer someone to hospice care.
Please submit a hospice referral online using our referrals page or call us 24-hours a day at (844) 978-2100 to talk to our team.
If your family has questions about hospice care, our hospice care services page can help explain the support available to patients and families.
You can also review common hospice care questions or contact Canestro Care Hospice to speak with our team.
If you are ready to refer a patient, you can submit a hospice referral online.