Making End-of-Life Decisions

Kathy’s father joked about dying. The few times he was serious, he told his family he wanted life-saving measures, but only if he was likely to be mentally fit and able to care for himself. Nothing was in writing.

He suffered a massive aortic aneurysm, was rushed to the hospital and underwent a lengthy surgery. The prognosis was poor. He likely had brain damage and more surgeries would be needed. Nevertheless, frantic, and unsuccessful, efforts were made to revive him.

Ten years later, Kathy’s mother died peacefully, under the care of hospice. Mother and daughter had several meaningful conversations about dying. Her mother had an advance directive, and Kathy was her health care power of attorney.

The Importance of End-of-Life Decisions

Kathy shared her story with The Conversation Project, a not-for-profit organization dedicated to helping people talk about their wishes for end-of-life care.

“Because of these experiences, I beseech people to designate a patient advocate and have the conversation – not just a generic conversation, but a meaningful one,” Kathy wrote.  

“Providing loved ones with the confidence that they know your wishes in the confusing time of illness, accident or death can make all the difference in the world, not just for the person passing, but for those left behind to wonder if they made the right decisions. Having the conversation is the gift that erases those questions and allows for wishes to be honored and healthy grieving to heal the normal pain of loss.”

Talking about Death

We all know our DOB, and depending on our attitude and age, celebrate our birthday with varying degrees of gusto.

But what about our DOD?

In a poem titled “For the Anniversary of My Death,” W.S. Merwin writes:  

Every year without knowing it I have passed the day
When the last fires will wave to me
And the silence will set out
Tireless traveler
Like the beam of a lightless star

We all know that, someday, each of us will have such an anniversary. But when and how we die are big question marks and ones we’d rather not spend much time answering, so many of us put aside the conversation for another day.

Consider these statistics compiled by The Conversation Project:

• 90% of people say that talking to loved ones about end-of-life care is important, but only 27% have done so;
• 82% of people say it’s important to put their wishes in writing, but only 23% have done so;
• 80% of people say that if they were seriously ill, they would want to talk to their doctor about end-of-life medical care, but only 7% have done so.  

When is the right time to have the conversation, and how do you start?

The Conversation Project has compiled a free, downloadable 12-page starter kit that will answer many of your questions, whether for you to talk about your end-of-life concerns or help a loved one express his or her wishes.

Four things to remember:

1. Approach your conversation as the first of several meaningful conversations, so you don’t have to cover everything in the initial discussion;
2. Complete this sentence, “What matters to me at the end of life is…” and use your comments to help frame your discussion;
3. Consider the best timing for the conversation (before your next illness, after the grandchild arrives, on April 16 National Healthcare Decisions Day) and where (at the kitchen table, in a park)
4. Find words you are comfortable saying to introduce the topic. For instance, “I was thinking about what happened to ________, and it made me realize ______”

Filling Out Advance Directives

Advance directives refer to two legal documents:

• Living will, which allows you to decide the type of care you would like to receive if you were to become permanently unconscious or terminally ill and unable to communicate; and
• Health care power of attorney, which allows you to select someone to make health care decisions for you (different than a financial power of attorney) if you are unable to communicate.

An attorney is not needed to complete directives, but witness signatures are required.

Advance directives vary by state. For instance, Ohio’s advance directives packet includes a Do-Not-Resuscitate (DNR) Order and requires two eligible witnesses (your spouse and children, for instances, are not eligible).

The National Hospice and Palliative Care Organization (NHPCO) provides free advance directives with instructions for each state.

A few things to keep in mind when selecting your health care power of attorney, also called an agent (and also an alternate if you want). Choose a person who:

• Knows you well
• Is not afraid to ask questions
• Will advocate on your behalf to doctors
• Can communicate with your family.

Talk to your potential agent about medical treatments, but also your values and quality-of-life issues. “Because situations could occur that you might not anticipate, your agent may need to base a decision on what he or she knows about your values and your views of what makes life worth living. These are not simple questions, and your views may change. For this reason, you need to talk to your agent in depth and over time,” NHPCO explains. 

Once completed and signed by witnesses, make several photocopies and distribute to the agent, family members, doctors, local hospital, retirement community and any other person or institution likely to be involved. Keep the original document in a safe, easily accessible location (not a safe deposit box), and tell loved ones where it is located. Carry a card in your wallet with contact information for your health care power of attorney.

Writing Other Meaningful Documents

You know all about the importance of having a will so your possessions are distributed as you desire, but you might want to also write an ethical will.

An ethical will or legacy letter is written so you can pass along your values, life lessons and other beliefs and memories to children, grandchildren and other loved ones.

Celebrations of Life offers guidelines for writing such a letter:

• Keep a journal and, over time, write even just a few sentences about meaningful experiences, things you are grateful for, people who influenced your life, spiritual and other values and other life lessons;
• Read examples of other ethical wills;
• Sign up for an online class or work with a trained facilitator.

You might want to also write your obituary, or autobituary. You can include experiences, accolades and life lessons – funny, poignant, challenging – that were important to you. And writing your own obit means facts will be correct (assuming your memory is accurate).

According to an article on funeralzone, “The final say: Why people are writing their own obituaries:”

“The self-written obituary is a great opportunity to make the funeral a two-way farewell. It gives you a chance to comfort your loved ones and make your thoughts clear to everyone you leave behind. Something as simple as thanking friends and family for their love and saying goodbye is enough to console the bereaved after your passing.”

Except for the famous, having lengthy obits published in a newspaper have gone by the wayside. But today, funeral homes offer online obits with lots of space, plus your story could be included in a funeral program.

Some people have no preference about how their funeral and remains are handled and are willing to leave it up to family members. But if a closed casket, cremation, donating your body to a medical school, funeral service readings and hymns and other issues are important to you, now is the time to put it in writing. Conversations are often forgotten in the grief-filled days after a loved one’s death.

Final Thoughts

How often have you heard about the importance of end-of-life care or read an article like this one, and thought, “I have to do that” and then not taken any action? Putting it off for another time is a common mistake, writes hospice physician Dr. Karen Wyatt for HuffPost.

Here are five others she cites.

1. Choosing the wrong health care power of attorney. (Pick someone you trust who is emotionally strong and will stand up to any pressure from doctors and family members.)  
2. Getting lost in all the possible scenarios that could happen to you. (Stick with “big picture” questions, such as “What do I want it to be like when I die?”)
3. Not discussing your plans with your doctor. (Schedule an appointment to discuss end-of-life issues.)
4. Not expressing your wishes to loved ones. (Plan a time to talk and give everyone in your “inner circle” a copy of your advance directive.)
5. Not updating your end-of-life preferences over time. (Review every five years or when there is a change in your health status.)

“The evidence seems clear that if you do complete your advance directives and avoid these six common mistakes,  you are more likely to have a peaceful end-of-life experience that honors your preferences. The time you spend now to do this planning and in the future to stay up-to-date will be worth it when you can spend your last days surrounded by love and content with a life well-lived,” Dr. Wyatt writes.

At Kendal at Oberlin, we experience the occasional loss of treasured and loved residents, so we decided to do something about it. Our staff got together and created the monthly Heartstrings newsletter, which offers comfort and addresses issues related to death and dying.

Residents also participate in Oberlin College’s Ars Moriendi class, which has not only resulted in students having a better understanding of the issues older adults face, it has generated long-lasting friendships.

If you are struggling with developing a plan and communicating with your family, please feel free to contact us for practical help. 

In the past, Molly Kavanaugh frequently wrote about Kendal at Oberlin for the Cleveland Plain Dealer, where she was a reporter for 16 years. Now we are happy to have her writing for the Kendal at Oberlin Community.