Studies indicate 73% of Americans would prefer to die at home, but up to 50% die in hospital settings. It takes courage and determination to carry out a loved one’s wishes for end-of-life care. Knowing what those wishes are and discussing them is the first step.
Since today is National Healthcare Decisions Day, it’s a good day to look at books with great information about end-of-life issues that can help start advance directive conversations.
If a family member says he or she wants to die at home, I recommend the following books for those caring for a dying loved one. The links in the titles (in color) take you directly to the corresponding Amazon.com page.
Coming Home: A Practical and Compassionate Guide to Caring for a Dying Loved One by Deborah Duda
Coming Home provides end-of-life care guidance that helps the reader acknowledge feelings of fear and guilt, and transform them with love. It provides helpful resources and practical information on preparing the home, talking openly about dying, legal and medical considerations, and how to be with someone in their final days. The book was first published in 1981 and the fourth edition came out in 2010.
The Last Gifts: Creative Ways to Be with the Dying by Jillian Brasch, OTR
The Last Gifts shares 17 first-hand accounts by an occupational therapist in a hospice program and her work with dying patients. Jillian Brasch details ways to help family be present and comfortable and help the dying patient to meet their final goals. Written for anyone in the vicinity of a dying person, this award-winning book is practical and insightful, with a direct simplicity that makes it entertaining and easy to read.
Dying the RIGHT Way: A System of Caregiving & Planning for Families by Janice Louise Long
While the title lacks appeal, Dying the RIGHT Way provides a lot of good information. The book draws upon the author’s experiences caring for her parents during their final four years. It is a guide for keeping elders or others requiring long-term care healthy as long as possible. The caregiving information includes tips, forms, checklists, and questions to ask. It also provides guidance for funeral planning and steps toward settling an estate.
The Needs of the Dying: A Guide for Bringing Hope, Comfort, and Love to Life’s Final Chapter by David Kessler
The Needs of the Dying uses comforting and touching stories to provide information that helps meet the needs of families and a dying loved one. David Kessler, a student and coauthor with Elisabeth Kübler-Ross, identifies key areas of concern for the dying: the need to be treated as a living human being, the need for hope, expressing emotions, participating in care, the need for honesty, spirituality and to be free of physical pain.
Any of these books can foster the conversations we need to have with our families on National Healthcare Decisions Day – or any other day, for that matter.
If you can only handle reading one page, check out The One Slide Project from the nonprofit organization Engage With Grace. The One Slide has five questions about how a loved one would want to be treated should they not be able to communicate. Download a PDF or JPG file with The One Slide Project today!
Thinking about what would be important to you in a medical crisis and making your wishes known to loved ones is what National Healthcare Decisions Day is all about – regardless of age or health status. Advance directives are best dictated before a family faces an end-of-life situation.
Today, April 16, is National Healthcare Decisions Day. The National Hospice and Palliative Care Organization (NHPCO) stresses the importance of patients and families talking frankly about the care they would or would not want if ever faced with a serious medical condition or life-limiting illness.
NHPCO, along with other national, state, and community organizations, is raising awareness of the importance of advance healthcare decision making. This includes completing an advance directive (also known as a living will) and appointing a healthcare power of attorney (someone to make healthcare decisions for you if you are unable to speak for yourself). However, equally important are the conversations with family and loved ones about healthcare preferences and choices.
“On a daily basis, hospice and palliative care providers witness families who have benefited from talking about their loved one’s wishes at life’s end and also see how challenging it can be when those conversations never happened,” said J. Donald Schumacher, NHPCO president and CEO. “For those who have taken the time to have thoughtful conversations – often long before a serious illness might be an issue – there can be much reassurance and comfort in knowing what is important to a loved one.”
“You should not assume that your doctor or even your close family members know what your healthcare priorities are. Some people facing a life-limiting illness would want to avail themselves of all possible treatments while others would choose to focus on quality of life, seeking hospice and palliative care services,” Schumacher added.
Click the link to learn more about National Healthcare Decision Day.
It’s the conversation no one is terribly eager to have, but it’s so vital. We never know when life will change in a flash. Don’t let discomfort with the topic keep you from letting your loved ones know your preferences.
Just as talking about sex won’t make you pregnant, talking about advance directives won’t make you dead – and your family will benefit from the conversation.
“Expiration Date” is a play that explores end-of-life issues with both humor and tears. The play is being presented in Minneapolis, and the CityPages publication there just did a Q&A with Candy Simmons, the playwright and performer. Here are a few paragraphs from the story by Ed Huyck:
‘Expiration Date’ looks at end of life issues
In Expiration Date, playwright and performer Candy Simmons explores terminal illness, a topic that, as she puts it, is often dealt with in “hushed tones” and is impolite to bring up in general conversation. In her one-woman piece, Simmons tells the story of Lucille, as we follow her from diagnosis to the end of her life. With it, Simmons hopes to generate talk about the topics.
It doesn’t make any sense, does it? We are biologically built to go through this experience. We’re born, we die. When did we as a society completely lose these coping skills? On one hand, we’re completely inundated with violence and TV medical shows, but it’s all so sanitized. When someone becomes ill, you hand yourself or your family member over to the medical professionals to deal with, then we die and we hand the corpse over to the funeral home to manage. The intimacy of this time in our lives is being lost.
When someone has been diagnosed with a terminal illness we speak in hushed tones; it’s disrespectful to discuss or bring up in polite conversation. What I found most interesting in talking about the piece to folks is that 85 percent of the time I mentioned the topic I was offered an unsolicited anecdote in return. People really do want to talk about death, about the experiences they’ve had, what they want for themselves and their loved ones. Starting the conversation just seems insurmountable socially, so we don’t talk about it and then we’re in crisis and it’s that much harder.
Although we are exposed to Lucille’s medical experience, her journey is more an exploration of her emotional roadblocks and the sheer logistics of navigating this journey we all have to face at some point. By following this woman’s journey, audiences are offered a safe way to laugh and be present with someone going through the death process. When I verbalize fears in my own life, they seem to lose a bit of power over me. This show is about starting that conversation, confronting that experience together.
A number of columns and articles on how doctors approach end-of-life care for themselves have appeared recently. Patients, take note: doctors choose quality of life over quantity of time almost every time. Do you have advance medical directives in place?
A column by Ken Murray that appeared in The Wall Street Journal and was excerpted in The Week‘s March 9 issue said:
Most doctors die differently than their patients. When our time comes, those of us who’ve spent our lives in the health-care system tend to decline aggressive treatment to save our lives…
Having seen so many people die, doctors know that “heroic measures” to prolong life often succeed only in providing a few extra weeks or months of suffering and indignity.
Unfortunately, most people would rather not think about death, so only 20 percent have written living wills that give them “control over how their lives end.” That’s a pity; the time to think about this is now. Like most doctors, I have made it clear that when my time comes, “I will go gently into that good night.”
On Forbes.com, physician and financial planner Carolyn McClanahan just posted a piece, How to Die Like a Doctor. Here’s the intro:
With the interest lately in how doctors die, now is a great time to help you plan to die like a doctor. In my last post, I discussed how doctors are great at completing their end of life planning, and they make certain the right people are in place to carry out their wishes. They also tend to take charge of making certain their loved ones have the most pleasant end of life possible.
When doctors choose how to treat their terminal illness, they take prognosis into account. If prognosis is not good, most opt for comfort care and conservative treatment. Ideally, a death well prepared for is a more comfortable death, and this is what doctors choose. So what can you do to die like a doctor? It takes some preparation, and for most, a change in how life and death are viewed. I’ll break this down into phases – pre-illness, illness, and too-late-to-cure illness. This is a lot to cover, so it will take a few posts.
Check out her posts – there’s a lot of great information she provides and timely tips.
And USA Today just ran a story yesterday titled “Best Care” may be dying well say hospice, palliative care docs. Medical advances help people live longer and longer, but too few physicians help people understand that longer is not always better, according to two new books.
The books are The Best Care Possible, a Physician’s Quest to Transform Care Through the End Of Life by Ira Byock and What Really Matters, 7 Lessons for Living from the Stories of the Dying by Karen Wyatt.
Byock says the needless suffering at the end of life is partly a result of a current political climate that accuses palliative care doctors and hospice physicians of promoting a “culture of death” or “death panels.” Rather, he writes, he is one of the compassionate experts who are “pro-life” and insist people get the best care possible — basically what they want for themselves — and no extra care.
“Most doctors have been trained to treat diseases and not deal with end-of-life issues,” he says. “American medical prowess is wonderful, but we have yet to make a person immortal. At some point, more disease treatment is not better care.”
People have to think about quality of life but also quality of death, he says, adding that it’s important that doctors don’t give up too soon on someone while also knowing the limitations of treatment.
“I think physicians have really fallen short on that obligation,” says Wyatt. “They haven’t been as helpful to patients as they could have been.”
So if doctors plan ahead and seek a peaceful passing, why don’t their patients? Everyone wants to go to heaven but no one wants to die to get there. Time to have some serious conversations, folks.
Last night I attended a talk by William S. Breitbart, MD titled “Confronting Our Mortality: A Crisis of Spirit, an Opportunity for Meaning.” The event was held by IDEAS in Psychiatry, a non-profit institute affiliated with the University of New Mexico Department of Psychiatry. Dr. Breitbart’s insightful lecture provided much to ponder regarding end-of-life issues.
William S. Breitbart, MD
Breitbart has dedicated much of his career to helping people find hope and meaning as they face their own mortality. He helped establish the American Psycho-Oncology Society (APOS) and has worked with dying cancer patients for a long time. He is Chief and Vice Chair of the Department of Psychiatry and Behavioral Sciences at Memorial Sloan-Kettering Cancer Center. He is also the child of Holocaust survivors, so he grew up with parents who talked about death a lot yet had a vital, loving outlook on life.
He presented two key ideas as we face our mortality. One, the philosophy and the wisdom of the ages has something important to impart to us, and, two, the importance of the integration of mind-body-spirit to our contentment and happiness.
In ancient times, philosophers were the doctors of the soul. They prescribed the proper attitudes and practices to foster health and happiness. After polling the audience for nominations, some of today’s philosophers might be Oprah, Deepak Chopra, and Lady Gaga.
Breitbart said that we can’t look at death constantly. Our minds won’t allow it. Human beings are animals designed to form meaning and identity. “We start cancer centers and have plastic surgery,” he joked.
And still, we are a death-denying society. He shared that great Woody Allen quote, “It’s not that I’m afraid to die. I just don’t want to be there when it happens.” Allen also is credited with the line, “I don’t want to achieve immortality through my work. I want to achieve immortality by not dying.”
The Search for Meaning
Awareness of death is a call to life. It raises three fundamental existential questions: Where did I come from? Why am I here? Where am I going (i.e. what lies beyond death)?
Human beings can objectively contemplate ourselves. We’re aware that we are alive. We also stand in wonder, awe and dread that we can die. To address this awe and dread, this death anxiety and existential terror, we create culture to offset death. To make meaning is the defining characteristic of human beings as a species.
The search for meaning is almost more important than finding it. Breitbart showed a chart titled Cancer and Meaning. Cancer can lead to three things:
- Suffering – When we encounter a limitation of our lives, it opens the door to enhance meaning in our lives
- Death – Ironically, death can help maintain meaning
- Guilt – This is when we have a loss of meaning, feeling like we have not accomplished enough with the life we were given, or failed to live up to our full potential
Breitbart quoted Albert Einstein’s last words before he died: “If only I had known more mathematics.” Can you believe Einstein felt he failed to live up to his full potential?
Cancer causes us to ask the existential questions. It gives us a sense of urgency and an awareness of the preciousness of life. But not everyone. Some don’t experience any type of meaning, and often those people become depressed, disconnected and hopeless.
Cancer as a Transformation Agent
Cancer is an interruption, an obstacle that causes a deviation in the trajectory of the arc of a life story. It prompts a transition, moving into a new phase that takes a while to incorporate into one’s psyche and accommodate the new information. Our physical limitations reveal our vulnerability and make us more aware of our existential guilt (not living up to our full potential).
In the face of cancer, it takes courage and will to find meaning. We still have the freedom to make our lives as we will, to create meaning in the lives that we still live. The task of facing death is to relieve that existential guilt, forgive and accept ourselves, and restore or sustain meaning.
Attitude is a Choice
The choice of one’s attitude in the face of death informs meaning. One can choose to form a connection to others, foster meaningful, authentic relationships, dedicate oneself to someone else or something greater than self, and seek transcendence with hope and acceptance. Or one can choose depression, anger, blame, judgement, shame and demoralization.
How to live in the face of the fact of our mortality? Breitbart suggests these three keys:
- Be Upright: Realize you are still alive and standing. You’re not dead yet. You still have wants and wishes and can exert your will. Continue having the courage to live, despite the finiteness of life.
- Be Whole: Remain connected to all that gives your life meaning. Relate to others, don’t isolate yourself, engage in the activities you love as you can.
- Be Careful: Care for yourself and those you love. Be aware of your legacy and have compassion for yourself and others.
“The only thing uncertain about death is when it happens and how it happens,” said Breitbart. “Even when people lose hope for a cure, they still have hopes. Acceptance of death is the acceptance of the live that you’ve lived.”
So the task is to accept how you live your life, today and every day. The meaning in your life can’t be given to you, you have to find it in yourself.
Reminds me of what the Good Witch Glinda told to Dorothy in The Wizard of Oz. Thank you, Dr. Breitbart, for an illuminating talk!
Filed under: End-of-Life Issues | Tags: death, end-of-life, medical directives
MoneyWatch reporter Steve Vernon just did a story titled “Five hidden retirement trends of 2011.” He reported on some important emerging trends that might not have made the headlines, but they still require your attention in the months and years to come. One of them involves end-of-life issues. They include:
1. New products and services to generate retirement income
2. The Department of Labor issues regulations on expert advice in 401(k) plans
3. High unemployment and the consequence of boomers working longer
4. Many more children in poverty than the number of retirees
And this was the trend that I find most of interest:
5. More and more people looking for a “good death”
While most of my writing focuses on helping people live long and prosper during our retirement years, we can’t escape the inevitable conclusion to our life’s journey. Discussing end-of-life issues is tricky in America. Witness the demonization of hospice counseling as “pulling the plug on grandma” during the recent debate on health-care reform. But this topic was the subject of an excellent and tactful article in Contingencies, an actuarial journal that admittedly doesn’t generate headline news.
The article notes that families who take advantage of Medicare’s end-of-life counseling report outcomes that are more satisfying emotionally for all concerned — the patient, family and friends, and health-care professionals. This counseling often results in saving money by forgoing desperate yet expensive life-extending measures, although saving money certainly isn’t the goal of these services.
Boomers will receive a preview of coming attractions as they help their parents transition. My father moved from the hospital into hospice care after counseling from his doctor, and our entire family was very grateful for this decision. Boomers will probably redefine how we finish our lives, just as we’ve redefined all stages of life throughout the decades.
Lessons learned: If you haven’t already done so, adopt a medical directive that spells out the treatment you’d prefer as the end draws near. The people you care about most — your spouse, children and close friends — will be comforted by knowing your wishes.
The trends reported here are some of the tougher issues we collectively face, as our nation navigates uncharted waters with the aging of the baby boomer generation. The best way to meet these challenges is to face them head-on, so kick these ideas around with work colleagues, family and friends. We’ll figure it out together!
Click here to read the entire article.
As the family gathers together this Thanksgiving weekend, it’s an ideal time to start a conversation on end-of-life wishes, don’t you think?
Actually, you probably haven’t thought about it. You just want to get through the turkey feast, the football games, the Black Friday shopping, and hanging out with your family without getting too deep. Having an in-depth conversation about how you or your loved ones want to be treated in a medical emergency when they can’t communicate what they would want done just isn’t on your radar.
Trust me, you want to have these conversations before you find yourself in a hospital floundering through a health care crisis with people you love. Today’s guest blog post from the fine folks at Engage With Grace provides some good insights.
Occupy With Grace
Once again, this Thanksgiving we are grateful to all the people who keep this mission alive day after day: to ensure that each and every one of us understands, communicates, and has honored their end of life wishes.
Seems almost more fitting than usual this year, the year of making change happen. 2011 gave us the Arab Spring, people on the ground using social media to organize a real political revolution. And now, love it or hate it – it’s the Occupy Wall Street movement that’s got people talking.
Smart people have made the point that unlike those political and economic movements, our mission isn’t an issue we need to raise our fists about – it’s an issue we have the luxury of being able to hold hands about.
It’s a mission that’s driven by all the personal stories we’ve heard of people who’ve seen their loved ones suffer unnecessarily at the end of their lives.
It’s driven by that ripping-off-the-band-aid feeling of relief you get when you’ve finally broached the subject of end of life wishes with your family, free from the burden of just not knowing what they’d want for themselves, and knowing you could advocate for these wishes if your loved one weren’t able to speak up for themselves.
And it’s driven by knowing that this is a conversation that needs to happen early, and often. One of the greatest gifts you can give the ones you love is making sure you’re all on the same page. In the words of the amazing Atul Gawande, you only die once! Die the way you want. Make sure your loved ones get that same gift. And there is a way to engage in this topic with grace!
Here are the five questions, read them, consider them, answer them (you can securely save your answers at the Engage with Grace site), share your answers with your loved ones. It doesn’t matter what your answers are, it just matters that you know them for yourself, and for your loved ones. And they for you.
We all know the power of a group that decides to assemble. In fact, we recently spent an amazing couple days with the members of the Coalition to Transform Advanced Care, or C-TAC, working together to channel so much of the extraordinary work that organizations are already doing to improve the quality of care for our country’s sickest and most vulnerable.
Noted journalist Eleanor Clift gave an amazing talk, finding a way to weave humor and joy into her telling of the story she shared in this Health Affairs article. She elegantly sums up (as only she can) the reason that we have this blog rally every year:
For too many physicians, that conversation is hard to have, and families, too, are reluctant to initiate a discussion about what Mom or Dad might want until they’re in a crisis, which isn’t the best time to make these kinds of decisions. Ideally, that conversation should begin at the kitchen table with family members, rather than in a doctor’s office.
It’s a conversation you need to have wherever and whenever you can, and the more people you can rope into it, the better! Make this conversation a part of your Thanksgiving weekend, there will be a right moment, you just might not realize how right it was until you begin the conversation.
This is a time to be inspired, informed – to tackle our challenges in real, substantive, and scalable ways. Participating in this blog rally is just one small, yet huge, way that we can each keep that fire burning in our bellies, long after the turkey dinner is gone.
Wishing you and yours a happy and healthy holiday season. Let’s Engage with Grace together.
To learn more please go to www.engagewithgrace.org.This post was developed by Alexandra Drane and the Engage With Grace team.
Boomers who don’t have advance directives to guide medical decision-making are asking for trouble. This is not just about end-of-life planning issues. Changes happen in the blink of an eye.
An Associated Press-LifeGoesStrong.com poll found that 64 percent of boomers — those born between 1946 and 1964 — say they don’t have a health care proxy or living will. Those documents would guide medical decisions should a patient be unable to communicate with doctors.
A living will spells out a patient’s wishes for medical care if he or she is unable to communicate with doctors.
The health care proxy, also known as a health care power of attorney, allows an individual to select a person he or she trusts to make decisions about medical care should the patient become incapacitated.
Kathy Brandt said living wills and health care proxies are a good idea for everyone whether they are healthy and young or older and not so healthy.
Brandt, a senior vice president at the National Hospice and Palliative Care Organization, said the two documents can spare families a painful fight and ensure that patients receive — or don’t receive — the medical treatment they wish should they end up in a situation where they can’t speak for themselves.
The living will is not “all or nothing,” said Brandt. A person could say he or she wants everything, something or nothing. For example, one person may want heroic measures taken to prolong life, while another may want to be resuscitated but decide against being dependent on breathing machines long-term.
Brandt pointed to high-profile cases such as the Florida family fight over Terri Schiavo as a smart reason to draft a living will and health care proxy.
