By Lori M. Craig, Attorney at Law
The first step in helping loved ones have the end-of-life healthcare they want is to talk about the end of life. It’s not the birds and the bees, but it is often a similarly difficult conversation to have. In honor of elder law education month, this article will cover some of the most basic questions families should address in planning end-of-life care.
1. Who will speak if the patient cannot?
Whether due to fatigue, pain management, dementia or physical impairment, there will be times when a patient cannot speak for himself. It is important to distinguish between those times when that incapacity is temporary and when it is permanent. If the incapacity is temporary, it may be better to delay the decision. However, if the incapacity has become permanent, the health care providers should have one person to give direction. Many parents hesitate to pick one child over another, but appointing more than one mouthpiece creates health care by committee. The burden of speaking for a loved one is heavy, but it is not eased by having multiple representatives.
2. What kinds of treatments will the patient accept and refuse?
It is impossible to know which treatments will be offered to your loved one, especially if you are addressing this issue before there is a specific illness or injury, but it is possible to know how your loved one feels generally about treatments. Does mom want every possible intervention – even ones that are experimental or risky? Does dad want to avoid the hospital at all costs?
3. When will these plans become effective?
Many designations will require some determination that the patient is no longer able to make his own determinations regarding care and treatment. It is important to give some thought to who will make this determination and what factors will be considered. Will grandma’s general practitioner or neurologist be in the best position to evaluate her capacity? Will dementia or chronic pain impair grandpa’s ability to care for himself?
4. Where would the patient prefer to receive treatment?
Patient preferences should be taken into account when determining whether your loved one should remain in her home, be transferred to a facility offering specialized treatment, or moved into hospice care. Some individuals may prefer to transition into residential care earlier so as to build a community before symptoms become too pronounced. Others may prefer to stay in the home as long as possible. There may be confounding factors such as affordability, availability, or patient safety. However, truly listening to your loved one’s concerns will help you prioritize her preferences when you need to do so.
5. Are there philosophical, religious, or other considerations to be addressed?
Your loved one’s preferences on religious, philosophical, moral and other grounds may impact whether he accepts or refuses certain treatments. These views may also color her choices regarding funeral planning and the disposition of her estate. Does grandpa’s faith require certain perimortem rites? Does dad’s dedication to scientific inquiry require that he try the experimental treatment? How does your vegan loved one want to handle supplemental protein? How much information does your blogger loved one want to share with the public? Even such issues as postmortem disposition of the body of your loved one may be impacted by these concerns. As much as possible, it is better to get a general outline for the care of your loved one’s mental, spiritual, and emotional well-being in addition to addressing concerns regarding her physical well-being.
6. How do I talk about this with my family?
No matter which difficult topic – love, money, death – there is little more immobilizing than the thought of “the talk” with a loved one. “Am I telling her too much?” “Am I not telling him enough?” “Is she even listening?” “Wait, does he already know all this?” “I don’t know what to say.” “I don’t know how to say it.” “I wish there was someone else to do this.” As with so many other conversations, discussions of end-of-life wishes are often prompted by a personal need or a public event. Perhaps a celebrity has revealed a terminal diagnosis or perhaps grandma fell down the stairs, whatever prompts the conversation, it is important to listen attentively and speak respectfully. Acknowledge the awkwardness, but move through it. The only possible way to give your loved one the end-of-life care she wants is to know what that care is.
There is no right or wrong way to have this conversation, but it is imperative to have it. Perhaps this is best addressed by discussing your own preferences with your loved one and paying attention to his responses. Perhaps your loved one is fond of checklists and would prefer to have a written list of questions. Perhaps your loved one would prefer to have a meandering conversation about what was nice when Aunt Myrtle died and what was terrible when Uncle Herbert passed away. Does your loved one want to discuss health care separately from funeral planning and from estate planning? Would your loved one prefer to address all three together with an elder law attorney? Is there time to wait?
For additional resources, please contact The Conversation Project, Prepare for Your Care, or your local elder law attorney.