Do you know what type of end-of-life care your loved one would or would not want? Some of the medical issues related to end-of-life care include things such as palliative sedation, artificial nutrition and hydration, and futile care.
Many people feel uncomfortable talking about death, dying, and end of life care.
The thought of dying may raise fundamental questions about life’s meaning and reasons for pain and suffering.
During these times, one can turn to inner faith, religion, counselors, family, friends, and research.
Understand Advance Care Planning
Advance care planning means putting your preferences down in writing so that if you are incapacitated or unable to speak for yourself, your family and health care providers know what type of care you would want.
Most commonly, people put their wishes in a legal document, like an advance directive.
Decisions to consider in Advance Care Planning include whether you would want:
- CPR, which is cardiopulmonary resuscitation, which might restore your heartbeat
- To be placed on a ventilator, which is a machine to help you breath
- Have artificial nutrition, which is through a feeding tube, and artificial hydration;
- Comfort Care, which are measures to relieve suffering, such as managing shortness of breath, giving medication for pain, anxiety, or nausea, and limiting medical testing.
Discussions about an Advance Directive or Living Will
Discussions about end-of-life care can be sensitive and stressful for both the caregiver and care receiver.
Most people do not dwell on the topic of death, especially their own.
To soften the conversation, you can let your loved one know ahead of time that you want to discuss their thoughts on health care preferences, giving them time to think a little more about the topic before the discussion begins.
Tell them you would like to understand what type of care they would want if they became unconscious or unable to make health care decisions.
Anything can happen to any of us; no one plans on having a car accident or heart attack.
No one knows how our future will unfold, so it is a good idea for everyone to have a written plan in the event they could no longer make decisions.
Why Family Should Encourage End of Life Planning
Everyone has different opinions and beliefs, so having a written plan provides clarity and guides doctors, caregivers, and family members to provide medical care according to one’s wishes.
It prevents family conflict and provides comfort because the care receiver removes the emotional decision-making burden from family, friends, and caregivers during crises or grief.
What is an Advance Directive or Living Will?
Frequently “advance directive” and “living will” are terms used interchangeably.
Both include a range of legal documents that outline what type of care you prefer if you cannot make those decisions.
A living will, for example, is a type of advance directive.
People may use different terms, usually depending on what state one lives in when referring to an advance directive.
The term advance directive is frequently used interchangeably with other terms such as
- Living Will
- Advance Healthcare Directive
- Medical Directive
- Advance Medical Directive
- Advance Health Care Directive
Health Care Proxy
A Medical Power of Attorney, also frequently referred to as a Healthcare Proxy, is a document where you can appoint someone who will make medical decisions for you.
The person’s provider must conclude they cannot make medical decisions before a medical power of attorney goes into effect.
When Does a Living Will or Advanced Directive Come Into Effect?
These documents will only come into play if you are incapacitated, unable to communicate, or make decisions.
For example, if you cannot make decisions because you have a condition such as a coma, stroke, or dementia.
It will outline your wishes regarding
- specific medical care,
- resuscitation efforts, and
- life-sustaining treatment.
This may include such things as specific directions whether you would want mechanical ventilation or feeding tubes, as well as surgeries and medications.
If you would like, it could also include naming a healthcare proxy such as a family member, caregiver, or friend who would then have the authority to make medical decisions on your behalf.
Naming a healthcare proxy can be a good idea if you have someone in your life that you trust, and they know your wishes.
So, for example, if you are unable to communicate, this is the person who will make medical decisions for you.
Who should have an Advance Directive or Living Will?
These documents are not just for older adults.
Even younger people should consider setting up either an advance directive or living will.
After all, accidental trauma or sudden illness can occur at any age.
Preparing these documents will shelter loved ones from making these tough decisions during a crisis and minimize family disagreements about resuscitation and organ and tissue donation.
8 Tips When Discussing End of Life Planning
Some may be open to discuss their preferences for end-of-life care, while others may feel uncomfortable or reluctant to have these conversations.
Family caregivers face the challenge of being objective and staying open to their loved one’s wishes while keeping their feelings and opinions in check.
Eight suggestions for a smoother conversation are below.
1. Do your Research
Each state may have different terms and forms they use; for example, your area may have an advanced directive or living will form.
Look over the form so you better understand what type of questions they have.
2. Write Down Discussion Points
Be prepared. Research End of Life Care and other topics you would like to discuss so that you can provide helpful information.
It is easier to stay focused on the topics you would like to discuss if you write down a list of discussion items.
Stay focused, stay on one topic at a time, and ensure that the topic is finished before moving to the next.
Table topics for another day if you do not have enough time to discuss all the topics in one sitting.
3. Schedule a Good Time to Talk
Set aside a good time to talk.
This doesn’t have to be formal, but let your loved one know you want to talk about their wishes so that you would be prepared in the event they cannot make decisions.
Consider a time when your loved one is very alert and has the energy to have a good discussion.
Do your best to minimize interruptions and distractions.
Also, ensure the appropriate people are invited, for example, if another family member should be involved in the conversation or think it is best to have a third party like a social worker or counselor facilitate the discussion.
4. Starting the Conversation
A great start is for you to complete your end-of-life planning.
People of all ages should do this.
The added advantage for you is that you are more prepared to help your loved one through the process.
It is also a good icebreaker, an excellent way to start the conversation about end-of-life planning.
For example, saying something like, “I was filling out an advance directive and realized that I do not know what your preferences are in the event something unexpected happened.”
5. Schedule a Time to Talk
Let your loved one know that you’d like to discuss what their wishes are in the event they are ever unable to make decisions, for example, if they were to fall into a coma.
By examining their preferences and putting them in writing, you will ensure that their choices will be followed.
Ask if they would like to involve other family members and schedule a time for you all to talk.
6. Listen and Do Not Criticize
Listen to their wishes; give them time to talk and think.
Some of their preferences may differ from your desires, which may be difficult for you to hear.
For example, your loved one may state they want a ‘Do Not Resuscitate’ order, or they may not want a feeding tube or ventilator to keep them alive.
Make a list of questions to guide the conversation and take notes, so you remember key points.
Be sensitive to their worries, whether about pain, disability, lack of independence, or decline in mental capacity.
7. Schedule a Follow-Up Conversation
Take the time you need to have a good discussion about Advance Directives.
This is a serious topic with difficult decisions that need to be made, so likely it may take more than one conversation.
Depending on your loved one’s questions or worries, you may have to do additional research.
Help them get their questions answered, even if you must do further research and get back to them with other information.
Give them time to absorb the information, so they make sound decisions.
If a conversation gets uncomfortable, or your loved one is not ready to make decisions, suggest that you take a break and give them time to think more about things.
It is essential to let them know you would like to discuss this more soon and suggest a timeframe for picking up the discussions.
8. Review Advance Directive Periodically
Advance directives do not expire, but the new one invalidates the old one if you change them.
You should review your advance directive occasionally so that you know they reflect your wishes.
If you want to make any changes to our advance directives, you should complete a new document.
Where Can I get Advanced Directives?
Talk to your doctor, frequently they have advance care planning forms available and can answer questions about them.
You can also find varies forms online, but make sure they are compliant with any state regulations.
AARP makes it easy, click here to find Advance Directive Forms by State.
NHPCO provides Advance Directives by State, along with additional information including preparing advance directives and selecting your health care agent.
Where to Find Help
Caring for a loved one takes a lot of time and energy. There may be resources available that may be helpful to you or your loved one.
There may be things like low or no-cost meal delivery programs, respite care, visiting nurses, or adult day care programs available in your community.
These programs, and more, can be beneficial to your loved one and alleviate some of your stress.
For an in-depth list of community resources, read our post What Are Community Resources and How to Find Them
Conversations about end-of-life preferences can be awkward and difficult, especially for the caregiver. Remember, the end goal is to ensure that your loved one’s health care preferences will be followed if they are not able to make their own decisions. This will prevent the family members from guessing what a loved one’s health care wishes are. Discussing their wishes and having them in writing removes the decision-making burden of family and loved ones during grief and crises.
The National Institute of Health provides great information on Healthcare Directives
From the Mayo Clinic, Living Wills and Advance Directives for Medical Decisions.