I highly recommend you read A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death. This new book by BJ Miller, MD and Shoshana Berger is a valuable guide to end-of-life details you probably won’t find in other such advice titles.
Who would think about sex when you’re facing death? Apparently, there’s a lot to consider. The authors offer great insights for having a sensitive discussion with your doctor. Check out the video review:
A Beginner’s Guide to the End breaks up its generous helpings of guidance into five sections:
- Planning Ahead: the paperwork needed to avoid leaving a mess, including wills and trusts, downsizing your stuff, and leaving a legacy of love.
- Dealing with Illness: receiving a dire diagnosis, figuring out what you want from the rest of your life, communicating the news to loved ones, and yes, this is where you learn about sex and death.
- Help Along the Way: hospice and palliative care, dealing with symptoms, how to get help in the hospital, and tips on talking to kids about death and dying.
- When Death is Close: funeral planning (my favorite topic), medical aid in dying, and ways to make the most of your final days.
- After: steps to take in the first 24 hours after a death, dealing with grief, writing a good eulogy and obituary, ways to celebrate a life, and distributing what’s left.
The text is punctuated with delightful illustrations throughout each chapter. In the Resources section, a full ten pages of links to organizations and websites provides a wealth of additional information (although, regrettably, they did not include AGoodGoodbye.com). In each chapter, information specifically for caregivers and other tips are highlighted in blue ink. And every chapter is summarized with a memorable quote on pages titled The Bottom Line.
Q&A with the Authors
BJ Miller, MD, is an assistant clinical professor of medicine at the University of California, San Francisco where he practices and teaches palliative medicine. His TED Talk, “What Really Matters at the End of Life,” has been viewed more than 9 million times. He has been profiled in The New York Times Magazine, and interviewed on Super Soul Sunday, The Tim Ferriss Show, and On Being with Krista Tippett, and has spoken at the Aspen Ideas Festival and around the world.
Shoshana Berger is the editorial director of the global design firm IDEO and formerly the cofounder and editor- in-chief of ReadyMade magazine. She has written for The New York Times, Wired, Popular Science, SPIN, and Marie Claire. She is the author of ReadyMade: How to Make [Almost] Everything: A Do-It-Yourself Primer.
How have your personal experiences shaped the approach to this book?
BJ: Having grown up around disability my whole life–-my mother’s polio and then my own issues from electrical burns and my sister’s bouts with mental illness—I’ve witnessed the myriad ways in which living with illness is so much harder than it needs to be. Having come very close to death myself, and through the deaths of people close to me, I’ve grown to see how transformative and even beautiful it can be to face death and touch the poignancy of life. We do ourselves a vast disservice by ignoring our nature, and our nature is to die. My role as a doctor brings a unique perspective as well. And when Shoshana asked, it felt just right to try with her specifically, with our one foot in healthcare, and the other outside.
SHOSHANA: When my father and my stepfather died within a year of one another, one with dementia, the other with cancer, my family and I were involuntarily enrolled in a crash course in illness and death. We had no idea how to ease their suffering as they waded through misguided treatment plans, unnecessary hospital stays, insurance snafus, hired help, nursing homes, and complicated family dynamics with multiple marriages and kids. As a caregiver, the experience was full of heartbreak, but it also plumbed new depths and made me a better person. As a journalist and design thinker, the experience motivated me to find a way to help others; so I approached BJ, who has helped countless people through the experience, and asked if we could write a book together. We know this isn’t easy or painless, but we’ve been there, and there’s a way to make it less painful and more meaningful, so you and your family can live fully right up until the end.
What question do you get the most from patients or their caregivers?
BJ: It’s often some variation on, how the hell do I figure out what I’m dealing with, and where can I get help?
Fear, shame, and guilt all play a part in the dying process. How can we better cope with those emotions?
BJ: The first thing to note is that these are all normal responses! It’s more a matter of working with these big feelings than it is about controlling or “curing” them. We set about creating buffers and counterpoints to curb the heartache and plumb its graces: love, forgiveness, compassion, creativity, perspective-making, aesthetics, meditation, and purpose all offer ways to defang the harder emotions of loss.
How can one find hope or even joy in the face of illness?
BJ: Illness begets loss. There is no way around that fact. But all that suffering also serves as a foil for joy and beauty and awe. We humans know pleasure because we know pain. And it also serves as the excuse for compassion and kindness and hope to be made real. Life is forever dynamic and always something we can affect. Death gives us all a reason to see life beyond ourselves; if you can exercise hope and joy on behalf of others, if you can care for life beyond your own, you will ease the sting of your own death and participate in a kind of immortality.
What’s the first thing one should do if they haven’t done anything to prepare for death?
SHOSHANA: The first thing is to just accept that it happens. That it will happen to you and to everyone you love. Once you’ve accepted that you will die, spend a little time thinking about how you will live until that moment arrives. Are you showing up? Being present for those you love or endlessly working and distracted? Do you allow yourself to be yourself? Your readiness to let go, without regret or fear of missing out, will depend how much you pour yourself into life.
Another way to prepare is to think about how others in your circle have dealt with aging, illness and death. What about their experience felt right—or wrong—to you? On a very practical note, think about how you leave. That entails cleaning up your messes: financial, physical, and emotional. Would your anger at someone hold if you knew you were going to die tomorrow? Will the people you love have to drop everything to deal with slag heaps of stuff that you can’t bear to get rid of? Who would you want to leave a letter for if you weren’t around anymore? What would you say to them?
You talk about coping strategies for grief but you also call grief an “opportunity.” What do you mean by that?
BJ: Grief means love. They are entwined absolutely. No love, no grief. With this understanding, you can learn much about yourself from grief. You will sense the depth of your affections; you will gain insight into how exquisite life is; you will learn to avoid stockpiling regrets as you go forward; and you will feel in your bones how interconnected we all are, and how much we need one another. For some, those may be scary conclusions, but you will also acquire a fertile mix of humility and pride by sensing life’s fuller reality.
What logistical hurdles take many families by surprise when a loved one passes away?
SHOSHANA: A really tactical logistical hurdle that takes people by surprise is that when there’s no will or trust and the person is no longer married, kids end up in probate court to settle the estate. It can take years to go through probate and shut down your parents’ accounts if they haven’t given you joint ownership.
So, one thing that will make a huge difference if you do it in advance: pick up the phone and call your cable, internet, cell phones, club memberships, and any other accounts that bill for services on an ongoing basis and put them in both your, and a partner or family member’s, name. Otherwise, your loved ones will be spending months muddling through bureaucratic minefields to shut down or convert the accounts to their name after you’re gone. Think of every frustrating call you’ve had with your cell provider, and then multiply it by 10, and you’ll get an idea of the administrative quagmire after a death—all while you’re deep in grief.
How can we better support loved ones who are going through chronic illness or hospital stays?
BJ: Some of the support required is practical in nature—bringing food in, watering the plants or tending to pets when the person is in hospital—and some is psychological or spiritual in nature. But it all starts and ends with the very simple and excruciating act of not running away. Drop the pity and pick up the empathy; this will all be you someday.
SHOSHANA: Caregiving is a hard job, and you can’t support your loved one well if you are not taking care of your own basic needs—rest, healthy food, exercise, family, and work. So that’s the first thing to do: Ask for help before you really need it, whether that’s a group of friends and neighbors who pitch in on errands or visits, or a hired hand who can step in and give you a break.
The hospital can feel like another planet with its own time zone and sterile troposphere. You can help people through it by bringing the comforts of home: music, a fan, their favorite takeout, and pictures or drawings from family and friends to warm the place up. And remember that those hospital bed rails retract. There are no rules against climbing in to cuddle up and watch a movie.
Also: Just show up. It might seem more polite to ask first if there’s anything she needs, but that puts the burden on her when she can’t even manage to make a grocery list, and has the unintended consequence of making her feel like a burden.
Instead, when you’re going shopping, text her from the store and ask what she needs to restock, or swing by to do a couple of loads of laundry while you chat. It will put her mind at ease to tell her how good it makes you feel to do such things—that you get as much out of it as she does. Just knowing someone is going to show up for you is powerful medicine.
What’s the most important thing families should do when preparing for a loved one’s passing?
SHOSHANA: The most important things families should do is also the hardest: Have an honest conversation about what they want the end to look like and prepare an advance health care directive. Our book provides a lot of pointers and starters for this conversation: Do they want to be kept alive on life support or allowed to die a natural death? To be buried or cremated? To die in the hospital or at home on hospice? It’s not an easy talk to have, but it is the only way to identify what your loved ones want and who they want to speak for them should they not be able to speak for themselves (that part is called “electing a health care agent”).
Families must work out disagreements away from the bedside. Nothing causes someone who’s getting ready to go more pain and stress than leaving behind unresolved wounds. As palliative care physician Ira Byock rightly says, so much pain and regret can be avoided simply by having honest conversations and saying the things that need to be said: I forgive you, please forgive me, thank you, and I love you.
What do you hope readers will take away from this book?
SHOSHANA: No one is asking that you give up the fear of death—we feel it, too—but with the guidance of those you meet in this book, you might find that it fades or softens. Our ultimate purpose here isn’t so much to help you die as it is to free up as much life as possible until you do. There are a million ways in which we try to help readers navigate and plan for the financial, emotional, and practical details of living and dying, but if we have to choose one vital and essential takeaway it is this: Participate. Resist the notion that you have total control; resist the notion that you have none. However you can, with whatever you’ve got, participate in your care, in your dying, in life.
BJ: My most basic hope is that readers will come to life’s inevitable end with less heartache and more meaning in their pockets. If enough people take it up, maybe we can all come to honor life’s full spectrum and be kinder to ourselves and each other along the way. I know my own goal is to appreciate what I have while I still have it; in other words, to find a way to love reality.
You can get A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death in stores and online at Amazon.com.