SPECIAL FROM Next Avenue
By Erica Manfred
After witnessing her mother's decline, a daughter pledges to do it differently
When a parent dies, it's common for surviving children to have a raft of regrets, from not spending more time with Dad to not telling Mom you loved her to failing to do more for them in their final years. Today there's often one other regret in the mix — not protecting a parent from invasive end-of-life interventions.
Few of us die in our own beds now. Modern medicine keeps many of us living longer, and then some of us die by inches, in an ICU or on a ventilator, sedated or in excruciating pain, while others fade slowly with Alzheimer’s disease or other dementias. When my mother died 15 years ago, after much unnecessary suffering, I determined to keep her fate from becoming mine.
Mom was an extremely healthy and active woman who, until age 85, had few medical problems besides arthritis. In her mid-80s she displayed some memory loss, though nothing that inhibited her lifestyle. I suspected she was developing Alzheimer’s, as her brother had, but that she had many active years left. She also had a heart valve that needed replacing or she'd face serious restrictions of her daily activities, along with an increased likelihood of a heart attack.
She wanted the surgery, and it was a success. But then she had an allergic, near-fatal reaction to the valve, after which she went rapidly downhill cognitively and became unable to take care of herself and severely depressed. Two years later, when her kidneys failed, her doctor suggested dialysis, which would have gone against her living will specifying no further invasive treatments. I arrived at her Florida home just in time to refuse the dialysis. She died peacefully at home, under hospice care, two weeks later. We had spoken about her wishes, and I knew that’s what she wanted.
After my mom passed away, I realized that I had to begin to make hard decisions about my own death, when I was still relatively young and healthy, to avoid an equally drawn-out end. Jane Brody, a New York Times health columnist and author of "Jane Brody's Guide to the Great Beyond: A Practical Primer to Help You" and "Your Loved Ones Prepare Medically, Legally, and Emotionally for the End of Life," helped me craft these five steps, designed to increase one's chances of a dignified death (although there are, of course, no guarantees):
1. I will refuse major surgery, especially cardiac surgery, after 80. People in their 80s who have major surgeries, or spend time in ICUs, commonly suffer cognitive decline afterward, even if they don’t have dementia to begin with, according to multiple studies. A heart attack is an easy way to go. Progressive mental decline is not.
2. I will appoint a health-care proxy whom I know will carry out my wishes. I have an adopted daughter who is still a teen, and an older former foster daughter who has pledged to care for me in my old age, but has also told me she could never "pull the plug." My friend Wendy, younger than I, and medically educated, is no wimp, and so she's my proxy. Brody emphasizes that anyone you appoint to the role must, first, not be easily intimidated by doctors. She cites the experience of a friend whose father was incapacitated by a stroke. When the man's doctor wanted to insert a feeding tube, her friend refused, but the doctor insisted, saying, "I don’t let my patients starve." Four years later, the woman’s father remains alive in a vegetative state, and his medical expenses have decimated his only child's finances, as well as his grandchildren's. If I'm ever in that situation, I know that Wendy would stand up to that doctor for me.
(MORE: Controlling Family End-of-Life Decisions)
3. I will craft a meaningful advance care directive so my doctors and proxy know my wishes. When drawing up a health-care proxy, Brody says, the advice of an attorney isn’t enough; a doctor should also review the document to help you understand exactly what you’re writing and signing. You need to specify what you mean by phrases like “do not resuscitate” or “I don’t want to be put on a respirator," because there may be cases in which you would want to be on a respirator temporarily. Similarly, if you use the term “quality of life,” you must state exactly what that means to you. (To me, it means still being able to read and write.) Brody recommends the website of National Healthcare Decisions Day as a resource for crafting directives. The Conversation Project can help you plan how to communicate your wishes to your family.
(MORE: How Strong Is Your Living Will?)
4. I will fill out a physician order for life-sustaining treatment (POLST) to address resuscitation outside a hospital. Do-not-resuscitate documents are applicable inside hospitals. But many people do not realize that you have to have a form such as a POLST if you don't want paramedics to resuscitate you, in your home or elsewhere, after a heart attack or respiratory crisis. Otherwise, EMTs are obligated to give you CPR, whether you want it or not. Only certain states currently recognize POLST forms; click here to find out if yours does. If you have a POLST, your partner or children should be aware of it and prepared to share it with EMTs. If the paramedics never see it, there's no way to be sure your wishes will be respected.
5. I will have, I hope, the fortitude to check out before I have advanced dementia. Alzheimer’s disease appears to run in my family, but I don’t want to dwindle away until nothing is left of my mind, burdening others with my care. Compassion and Choices, formerly known as the Hemlock Society, is a nonprofit organization dedicated to expanding and protecting the rights of the terminally ill. Its website offers resources about advance directives and living wills, and while it does not advertise the fact, it also has an End of Life Consultation Program to help families achieve a peaceful death for a loved one. Physician-assisted suicide, which Compassion and Choices supports, is illegal in every state except Oregon and Washington, but the group can help families weigh other options, such as discontinuing extraordinary measures.
Let The Person Speak
When an ill person brings up subjects that make you feel uncomfortable, it's natural to want to squelch the discussion or rapidly change the subject. However, it's very important to listen unselfishly and avoid responding with, for example: "Let's not get into that right now. Can't we discuss something more pleasant?" or "Do you really think it's helpful to dwell on this topic?"
Know When To Say "I Don't Know"
Whether the patient asks a spiritual or theological question that catches you off guard or she wants to know about the side effects of a medication, it helps to learn how to be noncommittal without seeming evasive. You don't want her to think that you don't care or that you're hiding something, and you definitely don't want to offer misinformation that might do more harm than good.
Don't Hesitate To Call In Spiritual Help
Even for people who weren't very spiritual or religious throughout most of their lives, it's natural to experience spiritual anxiety during a serious illness. And it's also natural for this anxiety to lead to questions that caregivers might find difficult or even overwhelming. If your loved one asks, for instance, 'What's next? Will prayer help? Why did God let this happen to me?' it's best to call in a qualified cleric.
Let The Tears Flow (The Patient's And Yours, Too)
Just as most of us are not comfortable with chronic illness, we are also not comfortable with crying. When tears appear, we tend to whip out a tissue and murmur something along the lines of, "It's okay. Don't cry." From now on, continue to pass the tissue when your ill loved one starts to tear up, but don't pressure him to stop sobbing. Tears are a natural emotional release for emotions ranging from anger to sadness to fear, and can be very therapeutic.
Resist The Urge To Spout Platitudes
When your loved one is uncomfortable, upset, or worried, you might be tempted to utter platitudes like, "Everything will be okay," "I know how you feel," "God has given you a long life," or "It's God's will." While we hope that these phrases will be a quick fix to problems we'd rather not deal with, the truth is that they're trite and meaningless. What's more, sugarcoating reality doesn't fool most people, and it certainly doesn't spark positive change.
Respond Constructively To Anger
Anger is a natural human emotion, and it's important to recognize that chronically ill people have a lot to potentially feel upset about. Understandably, many patients are angry that they are so sick. Plus, their pain and energy levels might make them less patient or less able to handle stressful situations. Therefore, it's not unusual for caregivers to be on the receiving end when their loved one's fuse blows for any reason.
Seek To Connect Heart To Heart
Understanding how and why an illness is getting worse and more painful is intellectual. But experiencing it is a very visceral and emotional thing. The patient needs for you to connect with him on a heart-to-heart, gut-to-gut level, not just a mental one.