Guest Blogger

End-of-life planning makes it easier to say goodbye

By Barbara Okun and Joseph Nowinski

Saying goodbye as the end of life approaches can be difficult, even for those with a gift for words. In a moving account in a recent issue of The New Yorker, writer Joyce Carol Oates describes the last week of her 49-year marriage, as her husband was dying from complications of pneumonia. Like A Year of Magical Thinking, Joan Didion’s poignant memoir of her husband’s sudden death and its aftermath, Oates’ essay highlights the need for each of us to think about death and dying—and discuss them with loved ones—long before they become a likelihood.

In our work with individuals and families facing death, we have seen too many people miss the opportunity to say goodbye because they avoid what feels like a scary or taboo topic: What do I want to happen when I die? Beginning this discussion early, preferably while you are in good health, can help pave the way for a “good death.” In our new book, Saying Goodbye: How Families Can Find Renewal Through Loss, we offer a guide to help individuals facing a terminal illness and their families navigate the realities of death and dying. Planning ahead is essential. Here are some suggestions for doing that:

Choose your team. Identify support people and specialists (legal, medical, financial, religious) you can count on to advocate for you and help you make decisions. Designate these people to act for you by signing advance medical directives.

Make your wishes known. Think about, and then begin to share with your closest loved ones, your wishes about

  • end-of-life treatments if you are incapable of making that decision for yourself
  • ending treatment, for example chemotherapy, if your prognosis for improvement was nil.
  • where you want to spend your final weeks if it becomes clear that you have only that long to live.
  • who you want to be with you in your final weeks, and what you would like them to do for you.
  • what you would want in terms of a funeral ceremony and burial.

Make plans for the living. Provide clear instructions for the guardianship of your children, if needed, or financial support for your survivors.

It isn’t easy to initiate a discussion about what you want to happen, or hope will happen, when your life ends. The purpose of this discussion is to ensure that your wishes are carried out and to save your loved ones the panic of not knowing what you would want and having to make these decisions without previous discussion or planning. One way to open the conversation is by saying something like, “I’ve been thinking what I would want if I were to become ill or die suddenly, and I want to share my thinking with you.” A colleague of ours, Samuel Bojar, M.D., has another approach. He has written a “Just in Case” booklet that includes his ideal end-of-life plan. He updates it periodically and makes it available on his computer to all his family members.

Things left unsaid is one of the themes that run though Oates’ essay. Don’t wait for a crisis or the specter of death to say “I love you” or “This is what I want to happen when my time has come.”


Barbara Okun, Ph.D., is a professor of counseling psychology at Northeastern University, a clinical instructor at Harvard Medical School, and a clinical psychologist and family therapist. Joseph Nowinski, Ph.D., is a nationally known psychologist with more than 20 years experience working with individuals and families. Their new book, Saying Goodbye: How Families Can Find Renewal Through Loss, has just been published.


Comments:

  1. Ralph Kennedy

    I went and spoke with Mr. Skidd following his posting and I found him to be focused on the bottom line (money) than my family’s well being.

    I personally will not be using his funeral home. Very disappointed.

    I thought the whole idea was to speak about pre arranging. Not how much my family has in the bank accounts. Very invasive.

  2. Lindy

    This was a lovely post. Our family have had 10 losses in the last 8 years and some just young members. My young Grandsons have become aware of death at a young age. But in saying that they have had time to spend with some of the family that had warning of their death which we are all grateful for.
    Lindy

  3. Bill Skidd

    I can certainly vouch that families that preplan funerals seem to be more at peace when the time comes. Most of us, (myself included), don’t like to dwell on our own mortality and put off funeral planning though we know it will be harder to do at an emotional time.

    Clarifying final wishes is the most important part of funeral planning. I try to encourage the families of the elderly and infirm to at least pause and discuss amongst themselves what they would like to do. The discussion also raises the opportunity to really connect with the person and often leads to learning new things about them.

    A distant second goal of funeral planning is pre-funding funeral costs. Here I often find it difficult to make the case for tying up funds that could be used on the person while they are alive. The one exception is in the case where the person is to go onto government assistance. In that situation, (in Connecticut), you can set aside funds for a funeral that would otherwise be consumed by the government as part of the costs of their care. In these “use it or lose it” situations, it is vital that the family establish and fund a funeral plan before the funds are gone. The legalese of elder law can sometimes be baffling. I love hosting a pre-planning discussion and cutting through the confusion for people. Once the concern and confusion has been lifted, the conversation usually blossoms into a happy and creative discussion about how to celebrate a life lived.

    Bill Skidd
    Funeral Director/Certified Preplanning Consultant
    Collins Funeral Home Norwalk CT

  4. Funeral Directors London

    Its so important saying your goodbyes. Your last words can really change people and will stick with them for the rest of their life. I did one funeral of a lady and she had made videos of her self to be played at her funeral in the church. It was so moving for everyone. This was really thinking about saying her goodbyes in great detail through her terminal illness.
    [URL removed by moderator]

  5. Aphys Fade

    I was very encouraged to find this site.I want to thank you for this special read.Most times, we are too scared to think about death, not to talking about dying. I definitely savored every little bit of the post and I have you bookmarked to check out new stuff that you will post.

  6. Julie Rosen

    Thanks for a terrific post–I couldn’t agree with you more. Unfortunately, as I recently blogged, the importance of advance care planning has gotten lost in the political debate:

    http://www.theschwartzcenterblog.com/2011/01/finding-common-ground-in-debate-on.html

    Julie Rosen
    Executive Director
    The Schwartz Center for Compassionate Healthcare

  7. Jacqueline Zimmer Jones

    “Too many people miss the opportunity to say goodbye because they avoid what feels like a scary or taboo topic.” In fact 7 out of 10 don’t put plans in place for their deaths or even vital emergencies. A recent contribution to the effort of getting people to actually plan, surfaced in the form of LeaveLight, an award winning book that is both, practical and spiritual. Spiritual by way of employing forgiveness, compassion, gratitude, and surrender. Beyond the practical forms, which can be downloaded, it offers motivational tools, help with talking to loved ones, and support in leaving more than material goods. When my father was dying, my brother and I found ourselves engaged in a day-to-day debate with 51 other people about his wishes. In the end, we were able to allow him to die as we knew he wished…five days later. This book gave me the words to engage in a conversation with my daughters about what THEY wanted for themselves should anything happen to them. I didn’t want to find myself in a situation where their partners and I would be on opposite sides of my daughter’s wishes. They both have since had conversations with their partners and are preparing advance directives and this book is the source of their ongoing planning.