Religious Leaders Supporting Death with Dignity

.
Lord Carey on assisted dying

The House of Lords in the UK will hear testimony and debate their proposed Death with Dignity bill this week. The bill closely emulates our model legislation, the Oregon Death with Dignity Act, which Oregonians approved in 1994 and reiterated their support in 1997. Much like in the US, Death with Dignity is a hotly debated topic in the UK, and the lead up to this week’s hearing there’ve been many excellent op-eds in support of the law. Some which have come out in the last week have been by prominent religious leaders.

All of them looked at their understanding of their religious doctrines in the context of being close to loved ones who’ve died. Each challenged their Churches’ official statements and how teachings of sanctity of life are consistent with giving people who are dying more options in their final days.

Last week, the former Archbishop of Canterbury, Lord George Carey shared why he changed his mind and now strongly supports the proposed Death with Dignity law in the UK. This week has been witness to supportive statements from Nobel Laureate Bishop Desmond Tutu and the current Bishop of Buckingham, Alan Wilson.

In each of these opinion pieces, these leaders reflected on how their religious traditions and compassion have led them to support the bill proposed by Lord Falconer. In his letter to the Daily Mail, Lord Carey directly took on claims made by opponents within his own church and reflected on his change of heart:

The fact is that I have changed my mind. The old philosophical certainties have collapsed in the face of the reality of needless suffering…In strictly observing the sanctity of life, the Church could now actually be sanctioning anguish and pain, the very opposite of the Christian message of hope.

Some complain that new laws governing the right to die would allow doctors to ‘play God’. But that is an argument without substance.

Health professionals already have power over life and death in numerous ways—such as the remarkable way in which newborn babies are kept alive until they are old enough to survive outside an incubator, or through complex surgical transplants.

The Church must start to face up to the reality of the world as it is.

On the heels of Lord Carey’s op-ed, Bishop Tutu weighed in with an opinion piece in The Guardian. Like Lord Carey, Bishop Tutu reflected on his lifetime of being a friend and spiritual advisor for people at all stage of life, including their final days. These experiences have framed how he thinks about, has documented, and discussed his own end-of-life wishes with his loved ones. They also caused him to think about the options he would want available if he were to receive a terminal diagnosis with six months or fewer to live, and he came to the conclusion, “I revere the sanctity of life—but not at any cost.”

The most recent affirmation from a religious leader was from the current Bishop of Buckingham. His statements in support of the proposed UK bill were covered by The Telegraph. Not only did he clearly explain the differences between assisted suicide and what the proposed bill would actually allow–assisted dying–he also discussed how his Church’s teachings are consistent with patient autonomy stating, “I have come to support assisted dying…precisely because I do believe strongly in the sanctity of life. Part of honouring this is respecting people’s integrity to make decisions about themselves.”

Supportive statements from prominent leaders from any community help those within the group better understand assisted death. What’s especially great about these op-eds is these religious leaders are talking about how Church doctrine supports end-of-life options outlined in Death with Dignity laws. These bishops’ public statements signal a major shift in the way people all over the world are thinking about and understanding what was once a radical idea: controlling the manner and timing of one’s own death.

View full post on Death with Dignity National Center



Intimate Conversations about Love and Loss

Karen Kaplan is an ordained rabbi and served as a hospice chaplain for seven years. Learn more about Encountering the Edge and read book excerpts on the publisher’s site or Amazon. You can also see Karen’s own blog, Offbeat Compassion.

Death with Dignity National Center’s Melissa Barber asked me as I prepared this post, “Why did you write this book?” This is something every author should keep in mind throughout the writing process. It implies, among many other things, that a solidly cogent answer must precede the genesis of any worthwhile book.

While writing my hospice chaplain memoir, I kept in mind how the author of Ecclesiastes admonished his son: “Of making many books there is no end; and much study is a weariness of the flesh.” And I was acutely conscious of needing abundant justification for writing Encountering the Edge: What People Told Me Before They Died.

Melissa’s question is also an excellent tool for self-reflection. It’s one thing to explain what a reader might get out of it, and quite another for authors to delve into the spiritual reasons underlying their endeavors. (The psychological reason is yet another dimension, and this is dealt with in the book.) I’ll now endeavor to take on both challenges.

Particularly for Death with Dignity followers, I think Amy Glenn Wright, columnist and blogger for Philly.com, summed up the why-read-it question in her review most succinctly: It’s a “needed reminder to reflect upon mortality in a culture built upon marketing the latest stimulant and distraction. What meaning can be found when facing the end of life? What legacy does each individual leave behind?… [This book inspires] reflection upon the significance of death’s inevitability and the beauty of existence.” In other words, I delved into the meaning and spiritual importance of those facing the loss of themselves and of their loved ones.

In Encountering the Edge I give a fly-on-the-wall account of what some of my patients said to me during my visits. These true stories show what they cared about, laughed at, wanted to talk about and wanted to avoid. This account also shows what hospice is like from the chaplain’s perspective, including the tremendous travel time involved and how chaplains handle the misuse of religion in patient care.

The fact that the memoir carries no religious message and doesn’t leave the reader with conventional answers, speaks to the deeper spiritual reason I felt compelled to put myself out there with this book. I feel my purpose as a chaplain is to provide an open and sacred space for people to articulate whatever is on their minds unimpeded by hidden agendas—including religious ones.

I think this is what defines authentic interaction, particularly when the subject is crucial such as pondering the purpose of one’s life. I have aspired to make the book work for the reader in the same way: These vignettes of patients and their families show their values, struggles, memories and pleasures at the moment I am listening to them. The act of concentrated listening helps them articulate these concerns and consequently gain more self-awareness of the import of what they have expressed. I hope this book will give readers their own space to freely reflect upon how facing loss shapes the unfolding of their own life paths and their own final chapters.

Editor’s note: Blog posts on Living with Dying about arts and humanities aren’t endorsements of these books or movies.

View full post on Death with Dignity National Center

Facing Death Together

Brant Huddleston
Brant Huddleston

After 17 years working for IBM, Brant Huddleston left the corporate world and became an entrepreneur. He’s recently started the Dance to Death Afterlife podcast to learn, with his listeners, about death and dying in an upbeat and educational way. You can follow the podcast on Twitter: @D2DAfterlife or Facebook.

Today is the tomorrow you worried about yesterday….and all is well.

The last time I saw my brother was on a boat in the middle of the Severn River near Annapolis, Maryland. It was summer, and the family had gathered to spread his ashes. John died in April 1992 at age 39, just three weeks after the death of my father. It was a hard year.

It was then I began thinking more deeply about death, and as a bona fide geek, how technology might enhance ways to tell the stories of the dead. My father’s life—64 years of adventure, living overseas, fighting wars, and raising six children—was reduced on his burial plaque to the infamous hyphen found between date of birth and death. My brother’s life is even less memorialized, as there is no marker to him of any kind, and rarely a mention on his birthday or death day. Maybe it is just too much for us to bear, especially my nearly 90 year old mother, who grieves his loss more than the rest of us combined. We are, as are so many others, practicing our own form of death denial. So as the Severn River swallowed up the last of my brother’s physical presence, an idea was born.

As a geek, I imagined using technology to create something I called a talking headstone, which would use multimedia to tell the stories of the dead. The living could point at a ”memorial,” which might be in the middle of a river, and ask, “Who’s there?” Then, a short audio/visual presentation would play, conveying the dead person’s stories and a celebration of his or her life. The talking headstone would expand the hyphen and make it come alive! But in 1992, the technology to make such a headstone did not exist, so I put the idea away for nearly two decades.

Years later, when I finally began shopping my idea among funeral directors, I learned something about their culture: many whom I encountered were staunchly resistant to change and hostile to new ideas. I immediately recognized the culture, for I worked for IBM at a time when they too stubbornly fought inevitable agents of change, like the personal computer, with such ferocity that the company nearly collapsed. This tendency for a mainstream industry to resist changes evoked by disruptive, new ideas is brilliantly described in the book The Innovator’s Dilemma by Harvard Professor Clayton Christensen.

From Christensen’s book and my personal experience with IBM, I knew the mainstream funeral services industry, with its legacy of digging holes and carving in stone, would never accept my high-tech invention. The future of the talking headstone lay elsewhere, with the rogues, the rebels, the dreamers, and those willing to challenge the entrenched paradigms of modern death practices. They’re the ones who, as the Japanese wisely advise, “ask why five times,” and they are among the very people I now seek as guests for my new Dance to Death Afterlife podcast.

The fear of death, and the subsequent denial of death, is pervasive in the United States, and it is unhealthy. Together we have an opportunity to change that, and if we follow the irrevocable pattern Professor Christensen traces back to the beginning of human history, that change will come from outside the mainstream. It starts with a vision. I believe by taking an unflinching look at death—a natural and unavoidable process—we’re better able to accept it, plan for a beautiful one, and most importantly, embrace every precious moment of life as a miraculous gift to be savored and cherished.

Others smarter and more talented than I have gone on to build the talking headstone, and I’m excited for them. My purpose now, as creator and host of the podcast, is to shine a light on their accomplishments (and all other facets of death, including those from the mainstream) so that together we can change our world a bit for the better, overcome our fears, and enjoy a fuller, more abundant life…for as long as it lasts. I want my listeners to be well informed and in control of their own experiences, as much as they can be. For if we don’t design our lives, and our encounters with death, then someone else will design those experiences for us, and it may not be what we truly want.

Did my brother John even want to be cremated? I don’t know. No one ever asked him.

Editor’s note: catch Melissa’s interview with Brant on his Dance to Death Afterlife podcast!

View full post on Death with Dignity National Center

Ask DDNC: Advance Care Planning

We frequently get asked questions about Death with Dignity or advance care planning for situations where dementia might be involved. Many individuals have concerns about confronting Alzheimer’s disease or other dementias in the future; others are in the midst of difficult and frightening situations when their family members are struggling with the disease.

The uncomfortable reality is there are no easy or clear cut answers. None of the three states with Death with Dignity laws allow individuals to participate who have dementia or Alzheimer’s disease advanced to the degree where judgment or decision-making is impaired. Those with early stage dementia without cognitive impairment do not qualify because they do not have a terminal diagnosis.

In the absence of expanded end-of-life care choices, advance care planning is essential. Two documents to consider: Health Care Directive (also called a Living Will) and a Durable Power of Attorney for Healthcare (most states allow you to combine these into one document). There are online versions available (MyDirectives), but the most prudent advance planning approach involves working with an attorney who is familiar with your state’s rules and regulations.

Another option available in many states is the POLST program. POLST stands for Physician’s Orders for Life-Sustaining Treatment, and it allows for your healthcare wishes to become a part of your medical chart. There are many benefits of participating in POLST programs, including: ease of access to your advance care documents, increased likelihood your healthcare wishes will be honored during an emergency, and portability (POLST forms can follow you from institution to institution).

One final option: an Alzheimer’s and Dementia Advance Directive developed in Washington State by Compassion & Choices of Washington, our colleagues in the Death with Dignity movement. Endorsed by the Western and Central Washington State Chapter of the Alzheimer’s Association, this document allows you to outline your preferences for care across many life dimensions including behavior management, personal and daily activities, and intimate relationships. While this document might not be deemed legal where you live, it can be a useful worksheet to explain your wishes to your children, family members, and friends.

While Alzheimer’s and other dementias are daunting diseases to face, advance planning may help provide a small amount of control to those who need it the most.

View full post on Death with Dignity National Center

Staff Spotlight: Cindy Silveira

Cindy Silveira, MPA
Cindy Silveira, MPA

Today we’d like to introduce you to a new member of our team, Cindy Silveira, MPA.

As part of the strategic planning process at the National Center, we’ve added capacity by hiring new staff members. It’s exciting to have fresh energy and new enthusiasm in our offices, and we’re eager to share their stories with you.

One new staff person who you may encounter in your interactions with our organization is Cindy Silveira, Director of Leadership Giving.

Cindy grew up in rural Oregon, but started her career in Boston, MA, where she attended the University of Massachusetts. Since moving back to Oregon in 1989, she earned a Master’s Degree in Public Administration and has built a career as a leader in fundraising and philanthropy.

She has served as Chief Development Officer for the American Red Cross in Oregon and Southwest Washington and has successfully led major fundraising programs at Providence Cancer Center, Lewis and Clark Law School and Peace Health Foundation, Vancouver.

In her role at the National Center, Cindy will be building a major gifts program and planned giving program for our organization. Her first task has been to meet with long term National Center supporters throughout the nation and to build a fundraising plan that will support expansion of our activities.

In her spare time, Cindy enjoys attending music events, cooking using fruit and vegetables from her yard, and enjoying her neighborhood in inner Southeast Portland. She has one son, Eric who is an artist in New York City. She enjoys the many cultural activities that Portland has to offer, and she likes to travel off the beaten path, enjoying neighborhoods and communities far away from traditional tourist attractions.

View full post on Death with Dignity National Center

Washington’s 2013 Death with Dignity Report

Death with Dignity by the numbers 2013
Death with Dignity by the numbers

Death with Dignity laws take what’s happening in the shadows everyday, in every state, and create an open, safeguarded process to allow terminally ill people to decide their own fate. These laws protect everyone involved—patients, their families, doctors and pharmacists—and provide a transparent process which leaves no doubt the decision rests solely in the hands of people who are dying and no one else.

As part of this transparency, the Washington State Department of Health is required by law to report information collected during the medication request and dispensing process. The 5th annual report was recently issued. One of my colleagues in the Death with Dignity movement explained, “there are no surprises, and the law remains remarkably unremarkable.”

After five years, more Washingtonians have come to understand Washington’s Death with Dignity Act, and not surprisingly, more people requested the prescribed medication.

Some quick facts about the usage of Washington’s law in 2013:

  • 119 people hastened their deaths under the Washington Death with Dignity Act, and a fourth of the people who requested the medication didn’t take it.
  • Prescriptions were written by 89 different physicians.
  • 77% of the participants had been diagnosed with terminal cancer, an additional 15% with ALS.

The numbers also show people who request the medication under Washington’s law are receiving high quality end-of-life care:

  • 86% of the people who died after exercising their rights allowed under Washington’s law in 2013 were enrolled in hospice.
  • Over 96% of the people who used the law died at home or in a long term care facility.

Much like the 16 years of data from Oregon, these five years of Washington’s statistics reveal no surprises. The patterns in the data haven’t changed.

View full post on Death with Dignity National Center

The Basics of Ballot Initiatives and Legislative Advocacy

This is the third in a series of posts focused on steps you can take to pave the way for Death with Dignity policy reform in your state. During the first, I provided guidance on how to talk to your friends, family members, and colleagues about the issue; in the second, I offered an overview about learning the issue and engaging allies.

If you’ve progressed this far, you know a lot more about the issue than you did when you first started, you have heard intimate life and death stories from your friends and colleagues, and you have identified a small, but dedicated, group of supporters who are ready to jump into this process with you.

At its core, policy reform is about organizing and political work. This third blog post is focused on the technicalities of ballot initiative work and the legislature.

Until last year, initiatives to the people through the ballot initiative process were the only successful vehicles used to secure Death with Dignity policy reform. Both Oregon’s law and Washington’s law were passed this way, and using the ballot initiative process has been successful because the issue consistently enjoys majority support as demonstrated in public opinion polling.

Death with Dignity is the kind of issue successful at the ballot box because when the people get to vote, their natural tendency is to vote yes. Managing a voter initiative on Death with Dignity is all about stopping the erosion of votes that happens when opponent campaigns begin running television advertising against the laws. If you’ve watched ballot initiatives on this issue, you’ll see multiple polls showing the “yes” side of the vote ahead in the months and weeks leading up to Election Day. During the final days of the campaign, the gap closes as the opponent’s messaging sways uncommitted individuals away from the “yes” vote.

The opponent campaigns are successful in eroding support by using two primary strategies: raising large sums of money from churches (mostly the Catholic Church) while deflecting voter attention away from funding sources and running misleading television advertising in the last six weeks before Election Day.

Unfortunately, in political environments, campaign advertising does not have to be rooted in the truth. In the Maine Death with Dignity campaign, the opponents ran advertising showing medication prescribed under the proposed law being delivered by mail and a young child picking up the prescription at the mailbox. This advertising was false, as per federal law no medications of this type may be delivered through the post office. It was frightening to some voters who falsely believed these medications could have been delivered by mail. There were no ads featuring Catholic bishops or priests saying, “we donated $1.3M to fight Death with Dignity in Maine because we think it’s wrong,” (a more honest depiction of the true opposition to the proposed law).

Because ballot initiatives are expensive and rife with dirty campaign tactics, if you are interested in securing Death with Dignity through this process, you will need professional advice and a lot of money. This should not act as a deterrent, though, because the initiative process is the people’s process and individuals have successfully launched initiatives in several states.

What can you do to prepare for such an endeavor? Research and planning is the answer. You can research ballot initiatives and read all about them through the Ballot Initiative Strategy Center or Ballotpedia. Through your research, you will find whether or not you state even has the ballot initiative process (only 26 states and DC offer the initiative process or voter referendums). You and your core group of supporters can volunteer for a ballot initiative on a different issue, thereby building practical experience by participating in all phases of the campaign.

It takes three to five years to successfully launch and implement a ballot initiative campaign, but most of the early work involves taking very small steps. You might be surprised how far you get taking very small steps.

I must add a note of caution here. Because our issue is politically controversial, ballot initiatives are incredibly expensive. About half of the money needed to run a pro campaign is raised within the state and about half outside of the state in question. You will need a national partner to help you raise money outside your region, so please contact us as you start out with those first steps!

The legislative process is equally daunting, and our issue has been successful in a state legislature only once. It may seem counterintuitive, but legislators are less moved by public opinion, so the presence of majority support for Death with Dignity has not been a factor in pushing legislators to advocate for policy reform.

Leaping into the legislative arena involves some of the same learning activities you might take with a ballot initiative: volunteering to support a bill making its way through the legislature, reading your state legislature’s website to understand the process of passing a law, and meeting with your own state legislator or attending another group’s Lobby Day. Even re-familiarizing yourself with the old Schoolhouse Rocks I’m Just a Bill video is entertaining and educational.

Similar to ballot initiative work, successful legislative work requires the hiring of professional lobbyists, political strategists, and grassroots organizers. It is relatively easy to find a legislator to get a Death with Dignity bill introduced; it is exceedingly difficult for that bill to gain momentum. It takes local organizing, a deep understanding of the rules of both chambers of the legislature, professional lobbyists, and a supportive coalition. A passionate group of political novices can move a bill forward, it happens sometimes, but it takes sophisticated planning and resources.

There is so much information to share about ballot initiatives and legislative efforts, and I hope I have given you a short introduction into these two worlds. If you have a point of clarity you would like to explore, please do not hesitate to contact me.

Next up: Building Infrastructure and Effective Coalitions (And be sure to catch part one in this series, So You Want to Pass a Death with Dignity Law in Your State and part two: Engaging Allies and Learning the Issue!)

View full post on Death with Dignity National Center

Dignity Watch: Lawmakers in support of Death with Dignity

What a year it’s been for advancing Death with Dignity policy reform! All this activity is even more impressive considering many states have abbreviated legislative sessions this year.
Picking up on the momentum from Vermont enacting the first law of its kind on the east coast and the first passed through a legislative process, several lawmakers on the northeastern seaboard advocated for Death with Dignity bills with more enthusiasm than they have in the past. Bills were introduced by elected lawmakers in Connecticut, Massachusetts, New Hampshire, New Jersey, and Pennsylvania, as well as Hawaii and Kansas.

Many of the legislative committees considering these bills heard impassioned testimony about the importance of safeguarded assisted death legislation, regional newspaper readers and editorial boards took strong stances in support, and lawmakers spoke prominently about the Death with Dignity bills they support.

The Connecticut bill, introduced by Rep. Betsy Ritter and Sen. Edward Meyer, was the most actively discussed in public forums this year. On February 7th, the Hartford Courant editorial board published a strong endorsement of the proposed legislation. The Connecticut joint Public Health Committee heard public testimony on March 17th. Dozens of people—residents of the state, Connecticut elected officials, and lawmakers from nearby Vermont—showed up at the State House and over 400 people submitted written statements to share their thoughts about House Bill 5326.

Prior to the public hearing, then State Rep. Holder-Winfield spoke to voters about why he supports Death with Dignity while he campaigned for a vacated state senate seat. Previously an opponent of these laws, he changed his mind after witnessing his mother’s painful and protracted death in 2012. In an interview with the New Haven Independent he explained, “Going through that and watching her suffer changed my perspective. The whole time she was in pain. She was coherent. I think she would have liked the option.”

In this year’s short session, it was impressive the Connecticut bill received as much interest as it did. Typically the state legislature only considers budget-related bills. While the bill didn’t advance before the deadline, that it was even considered this year is an indication of the growing call for Death with Dignity policy reform.

Two states, Pennsylvania and New Jersey, have longer legislative sessions this year, and their Death with Dignity bills are still active for consideration. The Pennsylvania bill was introduced in 2013 and will remain active throughout this second year of their legislative biennium. Pennsylvania State Sen. Leach proposed Death with Dignity legislation because, as he mentioned in an editorial, “Ideally, the end of life is a time filled with sadness, but also sweetness, reconciliations and meaningful goodbyes. It is an intensely personal time that should be choreographed and lived by the person and the family affected.”

The champion of the New Jersey bill, Assemblyman Burzichelli, started his push for this legislation during the run-up to our 2012 near-win for Death with Dignity in Massachusetts, and after watching Vermont Governor Shumlin sign the bill into law last year, he was encouraged to reintroduce the proposed legislation again for the 2014-2015 biennium. In an online interview, he stated, “People want control of their circumstances and they want additional options.”

We couldn’t agree more with all of these outspoken elected lawmakers. That so many are courageously speaking openly in support of these laws allowing terminally ill individuals to decide their own fates is a bold step forward for our movement. Like you and I, these lawmakers believe all Americans should have the additional end-of-life options afforded to them under Death with Dignity laws. With your help, the National Center, and its politically-oriented sister organization the Death with Dignity Political Fund, will continue to support these efforts and set the course of the movement throughout the US.

View full post on Death with Dignity National Center

It’s Been One Year Since Vermont Made History

One year ago today, Vermont made history. May 20, 2013, was the day Vermont Governor Peter Shumlin signed a bill to make Vermont the third state in the US with a Death with Dignity law—the first law of its kind on the East Coast, and the first passed through the legislative process. I was honored to be among the crowd which gathered to witness the bill signing ceremony. What a day!

It was a day full of emotion and elation. Some folks at the ceremony were facing serious illnesses and were relieved to know they’d have more options if their prognoses became terminal. People who’d carefully considered what’s best for themselves their entire lives simply wanted more control over their final days. Each person I talked to recognized that what might be the best decision for one person may not be what others would choose, but one truth prevailed: all individuals should be able to make that decision for themselves.

These principles are fundamental to Death with Dignity laws. People who’ve made all the major decisions in their lives—whether or when to get married, buy a house, have children—typically also want to have the option to make their final decision about how they die. As Governor Shumlin said during his speech, Death with Dignity “does not compel anyone to do anything they don’t choose in sound mind to do.” It’s the decision of a terminally ill, mentally competent individual, and no one else.

Vermont’s law, which emulates the Oregon and Washington Death with Dignity Acts, was achieved after more than 10 years of dedicated work together with our partners in Vermont. And our work didn’t stop there.

Soon after the law went into effect, National Center board member George Eighmey (who was with me at the bill signing ceremony) and other professionals familiar with the processes in Oregon and Washington worked closely with Vermont Health Commissioner Dr. Harry Chen to develop a system in full compliance with the Vermont law.

With our firsthand knowledge of Death with Dignity laws, we also quickly became a resource to help doctors and pharmacists in the state learn more about their rights, the safeguards in the law, and the request process. In addition, throughout the year, we provided information directly to terminally ill Vermonters seeking information about the state’s new law.

With Vermont’s law in place and celebrating one year, momentum toward Death with Dignity policy reform is now growing from, quite literally, coast to coast. It’s a matter of perseverance and time before all terminally ill Americans will have the option to control the manner and timing of their own deaths. With your support, the Death with Dignity National Center will be there every step of the way!

View full post on Death with Dignity National Center

Bridging the Hospice Gap

Mark Dimor
Mark Dimor

Mark Dimor founded The BioContinuum Group, Inc. (BCG) with the mission to develop healthcare advertising, marketing, medical education, and strategic planning for clients. Four years ago in response to a personal tragedy he began writing, advocating, and speaking about end-of-life, palliative care, caregiving, and hospice. His goal: find meaning to these events. What he discovered was an unmet need. He’s applying his 30+ years of marketing, communications, learning, and strategic expertise to these topics to educate and convince others of its value.

“The important thing is that when you come to understand something, you act on it, no matter how small that act is. Eventually it will take you where you need to go.” Sister Helen Prejean

Some of you may have listened to my podcast series Two Voices One Perspective: End-of-Life. Carolyn, a licensed hospice social worker, and I wanted produce these podcasts to share our perspectives on end-of-life. Carolyn’s view is professional, personal, and built around knowledge and practice. It’s based on her work and education. My view is personal, emotional, and practical. It’s based on my wife’s terminal diagnosis, caregiving, and passing. Carolyn and I share a deep and abiding belief that end-of-life care offers innumerable benefits for patients, families, and loved ones. Yet it’s a topic rife with fear. Our hope is our voices will take the fear out of this topic so others facing end-of-life or just considering it embrace its benefits, hope, and value for everyone and not just the patient.

The genesis of my interest in, writing about, and producing podcasts on hospice, palliative care, and end-of-life is directly related to my wife’s illness and death. During her treatment and following her death I sought support, both one-on-one and online. It was and remains an amazing journey of learning and compassion that’s directly related to Donna’s clinical team. They not only treated her, they helped me as the caregiver and spouse. She wasn’t just a patient she was a wife, a friend, a person whose life was not simply the beating of a heart. She was the hearts of those who loved her.

I spoke with many who were in or had similar circumstances to mine and I was struck by the significant percentage who didn’t receive the same care and support Donna and I did. They spoke about how they were struggling—far greater than I—emotionally, spiritually, and financially. This resonated deeply with in me. In a sense, this is my survivors guilt; why have I done okay while others haven’t?

Healthcare marketing and communications is where my expertise and experience resides. The marketing person in me saw the gap between my experiences with Donna’s clinical care and death and those who didn’t have the same level of care. I believe this gap could be closed with messaging and narrative. Yet no matter how good the message is the vast majority of readers and those interested in this topic are believers in end-of-life care. We’re speaking in an echo chamber and in most cases only speaking to each other. The question becomes how does this message of hope during care, end-of-life, and beyond reach those who aren’t part of our audience? That’s my hope, the podcasts will extend the message to those who haven’t considered these topics.

I’d ask we all take a moment to find a message either in the podcasts Carolyn and I have done, or articles that resonate with you, or our own narratives and share them with those who aren’t part of our collective end-of-life voice. Find ways to tell our stories to strangers. I’ve written about this before but it’s worth repeating, what if we gave ribbons for end-of-life or hospice and palliative medicine and not only for survival and fighting to achieve cure. Those two ideas reside on the same continuum of hope and well being. They share the common goal, active participation in cure and active participation in end-of-life. These are platforms which give everyone a whole that is far greater than the sum of our parts.

View full post on Death with Dignity National Center