It’s common to avoid talking about, planning for or even thinking about death — whether your own or that of your loved ones. But avoiding the topic can cause more problems, especially when it comes to medical care.
Here are some common questions and answers about end-of-life healthcare conversations so that you and your family can be prepared.
Q: Do I really have to have this kind of conversation? Why is it important?
A: Life is unpredictable and can change in a flash. Accidents happen. People get sick suddenly, even when they seem healthy. When this happens, things go much more smoothly and everyone’s wishes can best be met when there is a plan in place for what kind of medical care a person wants and how they want the end of their life to look.
If someone is unable to make their own medical decisions, friends, family and doctors may not know what they want. Having already discussed these wishes and putting them in writing is invaluable in helping people convey their medical choices when they can’t speak for themselves.
The best time to think about healthcare goals and values is when you and your family members are healthy and can make independent decisions. You probably have thought ahead and made choices about other parts of your life. For example, you may have done retirement, education or estate planning. You have made choices about your job and your home. Why not then plan for your future healthcare needs? Especially when you might not be able to eventually make those decisions for yourself. Doing so now can be an immense gift to your loved ones.
Q: I’m not sure how to broach this subject with a loved one. How do I start a conversation?
A: First, schedule a time to talk. The Family Caregiver Alliance recommends planning questions ahead of time. It is important for your loved one to explore his or her goals and relay their wishes in writing.
For example, you could say: “If something ever were to happen to you, it would be important to me that your wishes are honored. Could we have a conversation about your priorities and what you’d like to do in the event you can’t make your own medical decisions?”
If the person has not thought about what they would want to happen toward the end of their life or are unsure, there are helpful tools online that can help them determine and convey their goals. For example, The Conversation Project has a helpful step-by-step guide. And the National Hospice and Palliative Care Organization offers resources to help talk about serious illness and care.
Q: What specific documents should I consider preparing with my loved one?
A: There are some core documents that are important to create, called advance directives. An advance directive is a document that outlines your preferences for medical care if you are unable to make decisions for yourself.
It may name a person, called a healthcare agent or proxy, to make decisions for you if you cannot. This is sometimes called a power of attorney for healthcare. Advance directives also can list specific medical treatments you do or do not want. This is sometimes called a “living will.”
Q: What are other “end of life care” considerations worth discussing?
A: There are some common treatments used to preserve or prolong life that may be worth discussing upfront.
- Cardiopulmonary resuscitation (CPR). Cardiopulmonary resuscitation (CPR) is a lifesaving technique that includes manual chest compressions, and at times, mouth-to-mouth rescue breaths. It’s useful in many emergencies in which someone’s breathing or heartbeat has stopped, such as when someone has a heart attack. CPR may be appropriate as a way to try to stop an unexpected, sudden death. But it is less effective and may be harmful to those who have an end-stage or terminal condition.
- “Do-Not-Resuscitate” (DNR) order. In the event a loved one were to stop breathing or their heart were to stop, this means that no heroic measures be taken to revive that person. This includes no CPR, no chest compressions, no electric shocks or other medications. The person would have a natural death.
- Life-sustaining treatment. This includes whether to use feeding tubes and is another important consideration. Decreased eating and drinking is normal for those at the very end of their life, which can be distressing to family members. Whether or not someone wants a feeding tube and how long it should be used to extend life is an important point of discussion.
Q: Is there anything specific I need to do to ensure an advance directive is legally valid?
A: Depending on where you live, a form may need to be signed by a witness or notarized.
According to the American Bar Association, advance directives are legally recognized documents, but are not legally binding. This is an important distinction.
“Doctors have a legal obligation to respect your clearly communicated treatment wishes in any manner or form expressed, as long as the wishes are medically appropriate,” according to a 2015 American Bar Association article on myths associated with advance care directives and living wills. That being said, a doctor “can always refuse to comply with your wishes if they have an objection of conscience or consider your wishes medically inappropriate. Then, they have an obligation to help transfer you to another healthcare provider who will comply.”
Q: What about palliative care health professionals? Can they help and when should I engage them?
A: Yes! Palliative care can help. It is care for people who are seriously ill and focuses on finding relief from pain and other symptoms, providing support for caregivers, discussing advance care planning, clarifying the goals of care, and improving one’s quality of life. When determining end of life goals and care, it might be helpful to enlist a palliative care physician. Palliative care is used by people with and without terminal illnesses.
Consults the palliative care department at your local hospital or ask your primary care doctor to make a referral to learn more.
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