Death is the last taboo, and we learn about it in sterile hospital corridors from doctors who are trained to help us heal, not to help us die. And yet, theirs will be the only voice many of us will hear when we make end-of-life decisions with our parents. After helping my mother through her own passing, and then writing a novel inspired by the experience, here are nine pieces of wisdom I learned along the way.
- Recognize the signs.
It takes nine months to be ready to come into the world, and it often takes that long to be ready to leave it. There is a pathway to a natural death, and it may start up to a year in advance. You may see signs that Dad is disinterested, resigned or depressed. He might withdraw and stop participating. Understand this is natural, and is his way of preparing to say goodbye.
You might find that Mom wants to talk about the end of her life, and no matter how uncomfortable it is for you, let her. Ask her how she feels about dying. Talk about what kind of passage she imagines. Many people don’t imagine dying in the hospital intensive care unit, tied to machines, but over 60 percent of us will because no one asks.
- Remember to ask yourself: Whose life is it, anyway?
Sometime in the last few centuries, Americans turned death over to medical institutions. In doing so, we give up our personal and spiritual freedom at a time when we most need it. When I wrote Finding Frances, I realized how strong the pull is to take medical treatment at all costs, right up until the end, regardless of religious or personal beliefs. In the book, William, one of the main characters, struggles to help his mother die in accordance with her own beliefs, even though they are in conflict with his own. But here is what my own experience taught me: If we believe our parents are entitled to their own choices, their dying becomes easier.
- Consider Mom’s quality of life.
In our litigious, high-tech society, doctors offer increasingly improbable solutions when the most obvious solutions prove ineffective. When one method doesn't work, it's often followed by the words, “But we can try ___." Help Mom make the best decisions for herself by understanding the probabilities of success, the amount of damage the solution will cause and the probable quality of life if the new treatment is successful. Let her know it’s her choice whether or not to proceed. Her answer might surprise you.
- Help Dad communicate his wishes.
Everyone knows they should have a will, but between 40 and 60 percent of us do not have advance care directives, which are legal documents that spell out our wishes for the end-of-life experience. You can get a valid one for your state online or from your lawyer. There are organizations like Project Grace (www.projectgrace.org) that offer innovative, easy ways to capture those last requests. Help Dad fill his out and give copies to family members and doctors.
- When they can’t speak for themselves, honor the surrogate.
Advance care directives makes the job of being a health care surrogate is much easier. A health care surrogate is the person who will make decisions for Mom if she’s unable to speak for herself. In my book, Frances asks her son, William, to play this role. The choice should always be for the person who best knows and is willing to adhere to the parent’s own wishes without bringing a personal agenda. They may or may not have a limited power of attorney for the parent.
- Explore hospice.
Hospice care does not prolong life, but offers comfort treatment for a dying parent at the end stages. Most people say they don’t want to live their last days in a hospital, yet most people don’t get into hospice care soon enough to allow for a truly peaceful ending.
- Know your limits, and do your best.
All families have their histories and complications. It isn’t always a Hallmark moment when they gather around a sickbed. There will be plenty of time to live the family drama when the parent is gone. If your emotional limit is ten minutes, stay ten minutes, and then leave. If you’re exhausted, take time out for yourself. Your responsibility is for your parent’s peace and for your own physical and mental health. All you can give is your best effort.
- Try to find closure.
In the last days when it seems there is nothing left to do but grieve, ask yourself, “What will I always wish I said but won’t be able to?” and “What do I need to ask before it’s too late?” When your parent is dying on his own terms, death can be a beautiful time of bonding and mending.