While they had caught Ruth’s esophageal cancer fairly early, her chances were slim. There was roughly a 40% chance of survival over five years, and she had turned down any treatment beyond palliative. She told her children that if she had been younger she might have tried to fight it, but the chances were too long, and she didn’t want to live like that. Ruth was 78. She was tired, and she had known a long time ago that she was going to die. That didn’t mean, however, that she was at peace with it.
Being given a timeframe — a year, maybe less — did something to her. As her children explained to me, she couldn’t focus. There was stuff they had to take care of, legal stuff: doctors, living wills, and medical directives — important things that she had to sign off on. The children wanted this done so they could focus on spending time with her, making her as happy and as comfortable as possible. But she was too anxious about the planning; it was as if signing anything made it even more inevitable. It made her nervous, upset, and irritable.
This is something that we see at Institute of Aging too often. Ruth’s reluctance to discuss end of life shows a common human trait to avoid facing our mortality. But when we avoid this reality, we can become anxious, disagreeable, and/or depressed, and in this withdrawn state, we’re unable to deal with the legal and medical preparations that will make our lives easier in the long run. This avoidance may contribute to stress and pain for the families who just want to make sure that advance planning has occurred so loved ones can enjoy the time they have. Loved ones and friends of people who are dying should know that there are ways to understand and deal with the anxiety of end-of-life planning. It begins, like most things, with communication.
The Roots of Anxiety in End-of-Life Planning
We’re all born knowing that we are going to die, but its universal nature doesn’t make it any easier. The knowledge of death is sometimes ignored — many adolescents, for example, go through a phase where they believe they’re invincible — and only shows up as a passing tickle in the back our brains or a slight pit in our stomach as we age. It isn’t until we are nearing the end that most of us really stop to think about what our lives mean…and that’s normal.
End-of-life anxiety can come suddenly and in many forms, from feelings of listlessness to hyperactivity, including panic, tension, long bouts of prolonged worrying, and insomnia. Many people also experience contradictory feelings — wanting to live and wanting to die.
When a person is seriously ill, the effort to manage these ambivalent feelings can be very tiring. It makes it hard to concentrate on what’s in front of us. We think we will feel better when we ignore thoughts about dying and death. The paradox, though, is this: the more we try to avoid the reality of death, the more we think about it.
It’s just at this time — as we try to subdue these feelings of distress and address our own mortality — that we are faced with a lot of paperwork. Just learning about Hospice or the significance of a DNR (do-not-resuscitate) order, many older people believe that they are signing their own death warrant. This belief increases anxiety, which can lead to apathy and/or increase depression, which can result in an unwillingness to complete what needs to be done.
For many loved ones, it can seem cruel to impose paperwork on someone who has little time left. But these matters need to be addressed so your loved one’s wishes can be met in case of a medical emergency or if they are incapable of speaking for themselves. Doing so can bring peace of mind to them, but first you have to help them cope with and overcome the anxiety that comes with end-of-life planning.
How to Make End-of-Life Planning Easier
The key to making the end-of-life planning process as painless as possible is to take it one step at a time:
- Break it up. People experience complex emotions when they feel their time is finite and suddenly have to go through a stack of papers asking about end-of-life issues. To reduce anxiety, it helps to present paperwork in stages. You shouldn’t delay, but it’s fine if the process takes a few days or even weeks. Dedicate one day to a DNR order, another to a healthcare proxy, another to a durable power of attorney, and so on.
- Give them time to think. Planning for the end of life raises heavy questions. While you want your loved one to complete the forms, you don’t want to pressure them. They need time to think. Part of this slower pace is to present the documents for their review and understanding. Give them time to talk over their thoughts and feelings with friends, professionals, and other family members.
- Help them find the right legal professionals to talk to. There are many people who have a lawyer and have their affairs in order. Many more, however, don’t have everything they need to make an informed decision, and if you’re a non-professional, you might not be able to help as much as you’d like, either. However, you can still assist in finding the right people. Sites like avvo.com and yelp.com give group reviews on lawyers and attorneys, and other sites like martindale.com give peer reviews. These resources can help you find someone who will provide unbiased and client-focused assistance to make sure that everything is done right.
- Make it easier with online forms. A lot of end-of-life planning can be done online, which is enormously helpful for caregivers who aren’t professionals and can make the task seem less overwhelming. Helping out an older adult who may not be as comfortable with working online is a great way to relieve anxiety.
- Find psychological support. At Institute on Aging, we think that talking to professional counselors and psychologists can help people work with the anxiety that’s causing them to delay what needs to be done. Our psychotherapists use an evidence-based — as opposed to theory-dependent — approach to diagnosing and managing symptoms of anxiety. It’s a collaborative approach that can provide a new outlook on life.
Our compassionate professionals work with older adults in the following ways:
- Problem solving, so that they can help overcome the reluctance to get started. Once we make an action plan, we can then see these important tasks as manageable.
- Sleep and relaxation coaching. Insomnia and tension are symptoms of anxiety, and relieving them can help your loved one face what they need to do with greater clarity.
- Cognitive behavior therapy, a short-term approach to changing cyclical patterns of negative thinking and behaviors.
Few find discussions of end of life easy, and fewer still look forward to the paperwork. However, there are serious medical and legal issues that have to be taken care of so that the final days meet the wishes of your loved one. As a family member or friend, you should face the bureaucratic hassle with patience and empathy for the older adult in your life. Give them space, provide encouragement, and aid them in getting any legal and emotional help they may need.
Some people view dying as a private experience, but when family and friends come together as a result of illness and impending death, dying becomes a community experience. The better prepared we are for death, the better able we will be to say our goodbyes to those who will survive us — endings really do matter.
To learn more about navigating the challenges of end-of-life anxiety and planning, contact us at Institute on Aging.