A majority of people report that talking about end of life care is important to them. However, only a small percentage report actually having a conversation on this subject. Although it can seem difficult or uncomfortable, initiating a conversation regarding end of life care is extremely valuable for individuals to have with their family and loved ones. Fear of upsetting others can often cause hesitation in initiating this conversation. Yet, a recent survey done by the Conversation Project found that most people feel relieved if a loved one starts the conversation about end of life care.
Ideally, talking about end of life care should take place while you’re healthy and able to make informed decisions. Waiting until the onset of a medical event, or a diagnosis of a life limiting illness, to discuss this topic will likely result in added stress and concern for everyone involved. Prior to any life limiting illness, take the time to write down your ideas about what you envision your end of life care should entail. For example, if given a choice, would prefer to die at home with the support of Hospice Care or at Hospice House. Or, if you were unable to make decisions for yourself, who would be responsible for making medical decisions on your behalf (health care agent or durable power of attorney for health care).
Once you have a good understanding of your wishes, decide who you would like to talk to about your thoughts. Initially, you could talk with a health care professional if you have specific questions, but in most cases it is best to have this discussion with your significant other or adult child(ren). Decide on a good time and place to have this discussion and meet with who you have chosen to have this conversation. Outline a few of the most important things that you want to be sure to communicate to your loved ones regarding your wishes for end of life care.
If you are a close family member or friend, you can also initiate the conversation to ask your loved ones what their wishes are for end of life care. You may need to make several attempts at having this difficult talk before you have a good understanding of their wishes. When having these conversations, think about what your feelings are regarding end of life. Understand that your feelings may differ from what your loved ones believe. Remember these conversations can be emotional at times, but are truly important and necessary. According to StartTheConversation.org, “A health crisis can happen to anyone at anytime. Don’t wait. Start the conversation today. It’s a gift.”
If starting the conversation is difficult, an icebreaker may be helpful. Try something like, “I was thinking about the future and wanted to talk about being prepared in the event of an illness”. Another way might be to bring up an end of life event that you had witnessed. For example, “I was thinking about my Dad at the end of his life and wanted to talk about what matters most to me when that time comes”. You could also say, “A friend’s mother was in a car accident and my friend had to make a lot of decisions regarding her health care. If something like that were to happen to you, I would like to know what your wishes are”.
Important Topics to Discuss
Listed below are a few important questions that you might want to discuss during this conversation.
- What matters most to you at the end of life? Think about what brings you joy and what is truly important to you.
- What are your particular concerns regarding end of life?
- What types of treatment do you want provided? Do you want cardiopulmonary resuscitation (CPR), artificial feedings, defibrillation, artificial ventilation?
- Is there any treatment you specifically would not want provided?
- What are your preferences for where you want to be at end of life? Would you prefer to be in a facility, your home, a family member’s home, a hospital, or somewhere else?
- What are the three most important things that you want your family, friends, and medical team to know regarding your end of life wishes?
- Do you know what your insurance coverage is for end of life care?
Your Power of Attorney for Health Care or Health Care Proxy is someone you choose to make medical decisions for you in the event you are unable to make those decisions for yourself. This person can be identified by completing your Advance Directives of Living Will. An Advance Directive outlines your wishes in writing, so that if an unexpected change in health occurs, your loved ones and physicians will know what to do. You can also inquire about the POLST (Physician’s Orders for Life-Sustaining Treatment) form with your primary care physician. This form spells out in detail of exactly what treatments you would like provided.
Everyone should have one of these forms completed in order to be prepared. Once the form is completed, you should review your choices at the start of every decade and at all major life events to make sure the person you have chosen is still the right person.
When choosing your Power or Attorney or Health Care Proxy, you want to choose a person who will make decisions for you based on your wishes. Choose someone who will ask questions and stand up for your wishes. You do not need to choose a spouse or family member but you should let your family know who you have chosen ahead of time. Share with this person what your wishes and choices are regarding end of life care and give them a copy of your Advance Directives.
There are many resources available and opportunities to learn more about end of life care options and starting the conversation with your loved ones.
Starting the Conversation. A helpful website prepared by Vermont’s non-profit VNAs and Home Health and Hospice Agencies. In partnership with VT Ethics Network.
The Conversation Project. This site offers a conversation starter kit that you can download and print out. There are also resources on choosing or acting as a Power of Attorney or Health Care Proxy, specific information on dementia, and how to talk to your doctor regarding your end of life wishes.
The Hospice Foundation of America
American Association of Retired Persons