More than 30 years ago, Wendi Clarke of Buxton, Maine, and her mother were riding in a car when a difficult but important discussion took place. At the time, Clarke was appalled at the topic of conversation but, years later, she realized it was the most forward-thinking and loving thing her mother could have done.
“While we were riding along — someone else was driving — she passed a brochure, her will and a spreadsheet to the back seat where I was sitting. The brochure was from a funeral home where she had recently made cremation plans and the spreadsheet reflected her wishes for the ultimate disposition of her assets,” said Clarke, a former paralegal at a family law practice in Gorham, Maine.
“My reaction was, ‘Mom! Do we have to talk about this NOW?’"
She caught me totally off guard. As time went on, she made a point of discussing her intentions with each of my four siblings. In hindsight, even though the topic and timing shocked me, I came to realize that it was good that she initiated that awkward and unsettling conversation with each of us. Upon her passing a few years later, there were no surprises and each of us was intent on honoring her wishes,” Clarke said.
Unfortunately, not all stories have such a peaceful ending. As a hospice chaplain, I have witnessed the panic and anxiety experienced by some people who are forced to make end-of-life decisions for loved ones in the final stages of death or who have already passed. At this time, sorrow and shock often negatively impact decisions that are made in the heat of the moment.
That’s why planning is so crucial, as Clarke’s wise mother knew well. But in addition to planning for our death, we should also be planning for particular stages of our life — specifically health care and end of life.
This kind of planning is called Advance Care Planning (ACP), and simply involves learning about the types of decisions that might need to be made, considering those decisions ahead of time, and then letting others know your preferences.
Charting a roadmap for your own healthcare with ACP puts you in charge of decision-making when it comes to your care. What’s more, it relieves your loved ones from making painful and unsure decisions for you.
Advance Care Planning and some of the terminology that goes along with it may seem daunting, but we’ll explain what it all means.
Life can have unexpected twists and turns, such as the diagnosis of a terminal disease, stroke, heart attack or accident. Advance directives are written instructions concerning your medical care treatment options and who can voice your wishes.
A good way to think about them is, “directions in advance (of your death).” These instructions will be relied upon by your family, friends and doctor or other appropriate medical professional in the event you are unable to make your own decisions.
A clearly and carefully worded will is your greatest protection
Living wills aren’t only for senior citizens or nursing home residents; they are for any adult. In a living will, your wishes are spelled out to lessen the possibility of confusion or disagreement over what you want when your life reaches its end.
A living will is a legal document detailing the kind of medical treatment and life-sustaining measures you want or don’t want, such as mechanical breathing (respiration and ventilation), tube feeding or resuscitation.
The person you’ve carefully chosen to make decisions for you is known as your Power of Attorney (POA) and responsibilities vary, depending on designation.
The durable power of attorney, also called POA, is usually a person, or agent, you designate to make all financial, legal and medical decisions for you. “Durable” is the term that is key to have the authority continue beyond the point that the person granting the responsibility is no longer of sound mind.
A financial power of attorney helps with financial matters only. A health care or medical power of attorney helps with medical decision-making.
A POLST (Physician Ordered Life-Sustaining Treatments) is a medical order for seriously ill patients and is in addition to advance directives.
The POLST often works in harmony with advance directives to assure that those who are seriously ill will have medical treatment options and preferences carried out.
It is important that you let your physician know your wishes concerning a “do not resuscitate” (DNR) order, which is a request to not have cardiopulmonary resuscitation (CPR) if your heart stops or if you stop breathing.
Advance directives do not have to include a DNR order, and you don’t have to have an advance directive to have a DNR order. Your doctor can put a DNR order in your medical chart.
If there is no will, the state will govern how a person’s estate is dispersed.
Wills can be written by individuals or a legal professional but you should realize any Will can be contested.
The value of an estate can change over time and while it isn’t necessary to review one’s Will every year, it should be reviewed after a major life change such as the birth of child, divorce or death.
“It is a good idea for a parent to discuss the content of their Will with their grown children to avoid, or at least reduce, any animosity that might arise after their death,” Clarke says. “Most of us know of a family that was shattered by bitter post-death resentment and/or hostilities over their parents’ estate. It doesn’t even matter whether there is a lot of money or very little.”
Looking ahead with an Advance Care Plan benefits everyone and allows wishes to be honored
I’ve sat beside a person who had died during the past hour, while family members frantically thumbed through the phone book, trying to find a funeral home to send a hearse for the body. It is a scenario that can be avoided by accepting the reality of death and planning for it as best as possible.
The biggest gift a loved one can give to his or her family — such as Clarke’s mother gave her family — is having final arrangements completed and made known before death or serious illness. Then, before a tragedy, surviving loved ones can concentrate on grieving and healing.
Pre-planning eases the burden for loved ones, who otherwise would be forced to make the decision for you at an emotionally-charged time and they don’t have to second-guess your wishes.
The most important thing is to begin the conversation with loved ones now, if you haven’t already started. It may feel uncomfortable at first, but it is a necessary conversation to begin the process to ensure that your end-of-life wishes are carried out as closely as possible.
And, once final arrangements have been made, there can be a sense of relief for everyone involved. Peace of mind is priceless.
- Most people say they would prefer to die at home, yet only about one-third of adults have an advance directive expressing their wishes for end-of-life care. Among those 60 and older, that number rises to about half of older adults completing a directive.
- Only 28 percent of home health care patients, 65 percent of nursing home residents and 88 percent of hospice care patients have an advance directive on record.
- Even among severely or terminally ill patients, fewer than 50 percent had an advance directive in their medical record.
- Between 65 and 76 percent of physicians whose patients had an advance directive were not aware that it existed.