Viewing entries tagged
advance directive


Plan for No Regrets...

Some of us have the best of intentions when it comes to our plans to complete our advance directives or start the advance care planning process with our families. But, our intentions to plan for the medical unknown are often waylaid by our fears or what we perceive to be our loved ones' fears of discussing such things.



NJHPCO's Telling, Touching Video

If you’ve ever sat down to have ‘the conversation’ about advance care planning with your family members or even your friends, you’ve probably had to assure someone that you didn’t want to talk about death, but how they plan for life circumstances. It’s something we’ve said time and time again and something that we stand by.



Have you planned?

A personal call to action and story from advance care planning advocate Shalama Jackson, writer and Board Member of Carolinas Healthcare Public Relations and Marketing Society.

If you were incapacitated, would your loved ones know what type of health care intervention you would want? Would your family know who you would want to speak for you if you could not speak for yourself?

The possibility of becoming physically or even mental incapacitated by either accident, injury or illness is very real and one that should not just be ignored.



'Empowered': One CEO's Take on ACP

In our efforts to bring you the importance of advance care planning through the eyes of varying individuals nationwide, we cast a wide net. Most recently we caught up with a well-respected leader in the hospice and palliative care community— Malene Davis. Davis is President & CEO of Capital Caring, one of the first and largest nonprofit providers of hospice and palliative care services in the United States, serving thousands of patients across six regional office locations throughout the metropolitan Washington, DC area. And, we were able to steal a few moments of her time to get the scoop on what advance care planning means to her. Here are some highlights from that interview:

Q: What was it like when you first completed your advance directive?

A: I was naturally a little hesitant. This is not an easy thing to approach for anyone, no matter what your age, or your profession. But I also felt empowered because I knew I was planning ahead in the event my health was compromised to a point where I couldn’t make decisions anymore. I wanted my family to feel assured that things were in order so they will never have to guess about what decision to make, especially during an emotionally charged time.




NHDD Blog Rally 2011...

Rallying to Encourage and Empower Us All to Make Our Healthcare Decisions Now for the Unknown Later… 

College education. Career path. Relationships. Starting a family.

Buying or selling a house. Vacations. Retirement. From the age that we’re old enough to understand, most of us are taught and accept that these are the markers in life that we plan for. However, there’s one key marker that’s all-too-often missing from this list: healthcare decision-making. Like planning for these other life events, planning for the time (or times) that we are unable to express our healthcare wishes is of the utmost importance. It is something that should be well thought out, documented and revisited at different points in life to reflect any change in our desires or family situation or the person we wish to advocate for us. Unfortunately, it is a planning point that that majority of us have missed. As a consequence patients’ families suffer the added burden of having to guess when a health crisis happens. That’s why Nathan Kottkamp founded National Healthcare Decisions Day (NHDD) back in 2008 and why this nationwide advance care planning awareness initiative is as important as ever. So this year, I’ve joined my fellow bloggers throughout the country to spread the word about the importance of advance care planning with this special NHDD edition blog.




Just 12 Days 'til NHDD 2011: Won't You Share Your Story?

So here’s my story:

I clicked the link to fill out my very own advanced care directive. What an odd feeling to be the ‘patient’ filling out this form. It’s a subject I’d broached with my family time and time again (and, they were having no part of it), something that I’ve publicly advocated for over a year and that I’d publicly and privately chastised others for either not doing or not being interested in doing. And now, here I was, finally making an honest advocate of myself. As I read the instructions, all I could think to myself was ‘who can I possibly trust to respect and voice my wishes? ’ I’m closest to my twin sister and my mom, but not only do they not even trust me to pick out my own wardrobe, I can’t even bait them into a conversation about advanced care directives. Oye Vay! So I read it again! After more careful thought, I decided that my mom might let emotion cloud her judgment and my advanced care directive may turn up missing. But Melissa – my twin sister – on the other hand, she’s a straight shooter. She might not like or agree with my choices, but she’d speak up because it’s the right thing to do.

Then, I got down to business, filling out the form! Luckily, this part was easy…what I had done for the past 16 months, is deliberate and clearly determine what I would or would not want done in terms of life sustaining treatments in various scenarios of terminal illness. Do attempt curative care in the initial stages of illness (if you haven’t already tried and failed) if physicians are hopeful of recovery or the odds seem like they are in my favor. DO NOT seek life sustaining care if it’s apparent that I’m dying and nothing is going to stop that process; let me live comfortably in my home surrounded by my stuff with hospice taking on the burden of care and giving aid to family caretakers. The details of which I clearly stated in the five lines allotted. And, it was a good feeling. In fact, ‘good’ may be an understatement, a wave of relief washed over me! My next thought was my next step: convince my family to have the same piece of mind I experienced when my advance directive was complete. So I guess my story is to be continued...


You may –or may not—have been able to relate to my advance care directive story. However, many of the people I’ve shared it with in hopes of sparking ‘the conversation,’ have. We want the NHDD initiative to inspire people from all walks of life to be moved to plan their healthcare decisions and so we need people from all walks of life to share their stories.


So, now I ask: after reading mine, won’t you share your story?



Advance Care Planning: Confessions (Cont'd)

Today, we'd like you to glean some inspiration from the continuation of Janice Lynch Schuster's telling advance care planning journey. Part one of 'Advance Care Planning: Confessions' was this week's Wednesday evening post.

Part 2 of 2 by Janice Lynch Schuster

(To the left Schuster is pictured with her four children; Meredith, mentioned in this piece, is the young lady on the far right)

Writing: 1997

In the late 1990s, I got involved in working with Dr. Joanne Lynn and Americans for Better Care of the Dying. Through that work, I came to understand and appreciate the importance of completing an advance directive, of naming a health care spokesperson, of making sure that one’s wishes and preferences are known. I wrote about admirable and successful programs, from Respecting Choices in LaCrosse, Wisconsin, to The Five Wishes document available online. I read about values questionnaires and life reviews. I wrote about how important it is for families to have the conversations, to record their wishes, to make sure that their wishes are known to one another and to their health care providers. I helped to write several books on improving care for the end of life, and in each one extolled the importance of creating an advance directive, describing it as a gift to families, a way to help them avoid heartbreaking and divisive decisions that can occur when no such plans exist.

And yet I was a hypocrite—for all my talk, I had not completed my own advance directive. I thought about it, talked about it, described my wishes to my husband, but never went so far as to put anything on paper. Then, in 2001, when my fourth child was born, I decided to complete an advance directive form as part of my labor and delivery. When I asked the nurse for the hospital’s standard form, she laughed. I was there to give birth, she said, not to die. Even so, I was by then an older mother, aware of the many complications that could arise during the most routine births. I insisted that I be given the form, which I dutifully completed, noting that if it came to it, sparing my life would be more important than sparing the baby’s. It was a selfish but essential thing to do; several other children then depended on me as their mother.

When I’m Gone

I saw a book advertised that I thought would help me through the process; if nothing else, it would give me a place to write down the scores of passwords and usernames I have developed in my prolific online life. I looked forward to the book, which is a nice spiral bound compendium of some 144 pages. I opened it, was promptly overwhelmed by it, and closed it. It sits on a bottom shelf, gathering dusk and triggering my guilt.

I don’t want to be morbid

My 18-year old daughter recently sent me an email message with the subject line, “I don’t want to be morbid.” For some reason, her abnormal psychology class was discussing the importance of creating advance care directives, and Meredith felt that she and I should sit down and craft hers. She didn’t want to think about dying, she said, but she did want to think about what she would want done if she were in a car crash and unable to live, breathe, eat, or think on her own. She asked if I could help her with this, and I promptly referred her to The Five Wishes website, which seems the easiest and most straightforward form to complete.

In hindsight, I realize that I need to sit down with her and complete this form together. We need to have a conversation, each of us, about what we want and don’t want, about what we fear and what we hope for. We think we know—but until we begin the dialogue, we are only guessing at beliefs, based on our own experiences. Today happens to be Meredith’s 19th birthday. As a present to her, I am making a promise to myself—and to her—to sit down together and go through this process.

Janice Lynch Schuster has written extensively about improving care at the end of life. With Joanne Lynn, she coauthored two books on quality improvement for end of life care: Improving Care for the End of Life: A Sourcebook for Healthcare Managers; and Clinicians and A Common Sense Guide to Improving End of Life Care (both from Oxford). Currently a senior writer with Altarum Institute, Schuster’s past work includes serving as director of communications for Americans for Better Care of the Dying. Her work has been widely published and is often featured in The Washington Post. She has received several blue pencil awards for her work with the National Institute on Aging.*



Hot Off the Presses (ACP News Round Up): From NHDD Events to Social Media and Patient Health Care

...that’s just to mention a few. Advance care planning has been ripe for media attention for a while and the press is finally taking notice. So here's what they're reporting on:

As you know, the NHDD 2011 team has taken steps to broaden the reach of the initiative and engage more people through social media with @NHDD on twitter and the NHDD Facebook page. Well, recent Dayton Business Journal article “Patients flock to Facebook for health” says we’re doing it the right way! If patients are turning to social media more and more to make their medical decisions, they are certainly running across NHDD!

However, we’re not the only ones embracing non-traditional means of spreading the word about NHDD. In “A drama of dying wishes,” the Charlotte Observer reports that Mecklenburg End-of-Life Coalition and Hospice & Palliative Care Charlotte Region, is hosting three, free productions of during this and next month of “Vesta,” a play written about starting the advance care planning dialogue. The production has been deliberately timed to coincide with NHDD in an effort to help people “have the talk.”

Turning our attention away from the stage and back to the presses and the blogosphere, here are a few more noteworthy articles:

  • Also in the Huffington Post, Clinical Psychologist Joseph Nowinski’s post What to expect when a loved one receives a terminal diagnosis” is a great way to spark the advance care planning conversation with loved ones. After reading all that your family unit will have to endure and overcome upon receipt of a terminal diagnosis, I'd be thinking : 'why wait and add more stress by not planning in advance?'

To round out our news tidbits, our trusted resource @HospiceAction just informed us that long time advance care planning champion on Capitol Hill Rep. earl Blumenauer will be the keynote speaker at their up and coming Hill Day 2011. We'll keep our ears to the ground to find out what he's got to say about the importance of advance care planning, advance directives and NHDD.

Check back on Tuesday for more on the latest advance care planning news stories.



Global Advance Care Planning: NHDD Inspires Innovation in Canada

My fellow, proud NHDD advocates, your eyes are not deceiving you and you haven’t misread the title of this blog post so there is no need to adjust your computer screen! You read correctly and the NHDD team couldn’t be more excited that just four days before we, here in the states, gear up to celebrate the Fourth Annual National Healthcare Decisions Day, our Canadian counterparts will be hosting their very own version of NHDD—“Advance Care Planning Day.”

Below is an advance care planning video featured on their site that we obviously love since it's a great resource!

We know it’s often said that imitation is the sincerest form of flattery, but in this instance it’s far more than that. The First Annual Advance Care Planning Day (ACPD), scheduled for April 12, 2011 is monumental! Why? In communities all over the world, we are taught to plan for our education, relationships, financial futures, children’s educations and retirements. However, this new international effort to promote advance care planning signifies that it may soon become universal standard for us to also plan for our unforeseen medical emergencies and end-of-life care.

Canadian Hospice Palliative Care Association (CHPCA) and ACPD Project Manager Louise Hanvey shared our hope that this is a step toward establishing advance care planning as a universal standard by first establishing it as a standard in our communities and nations— so for her, in Canada.

“Planning for the end of our lives is not easy, but we need to change our mindset about that,” Hanvey said. “Our [CHPCA and the National Advance Care Planning Task Force] main goal in launching this is captured in the initiative’s tagline—‘It’s about conversations. It’s about decisions. It’s how we care for each other.’ We’re all about connecting Canadian community organizations and leaders to the tools they need to spark the [advance care planning] conversation.”

We at NHDD would like to applaud the leaders of the Canadian National Advance Care Planning Task Force, CHPCA and all others involved in the planning of the first ACPD their nation has seen. Let’s all hope that NHDD and ACPD will serve as inspiration to advance care planning advocates worldwide and result in more similar awareness initiatives.



Making Our Mark in the Media: Advance Care Planning News Round Up

As we work with organizations and advocates throughout the nation to promote the value of advance directives to our families, friends, colleagues –and to everyone else we come into contact with on a daily basis—the topic is attracting more and more media coverage and overall, exposure. And, that’s what we’ve all been working so hard to achieve because increased exposure equals an increased opportunity to spark the conversation about advance care planning. So from now until April 16, 2011 when our efforts to raise the profile of advance directives over the past 12 months culminate into the observance of the Fourth Annual National Healthcare Decisions Day, we’ll be posting the “Advance Care Planning News Round Up” twice a week. Here’s what we have for you today…

Just yesterday, Aurora Health Care, in partnership with Aging with Dignity, explained how they are working together to give a voice to patients who may not be able to be heard during a medical emergency by posting “Five Wishes: how has advance care planning improved?” Available for you to view below, the short video discusses how the Five Wishes advance care planning tool has made completing advance directives more patient friendly.

In the past few days, we’ve also found two NHDD mentions garnered through the media outreach work of participating organizations:

In a short, but effective letter to the editor titled “This will help you take care of your own health care destiny,” NHDD participating organization Western Maryland Health System Hospice Services highlights the importance of the initiative and having advance care planning conversations in general.

While scanning the newswire, we ran across the MedicAlert Foundation’s recent press release urging ‘All Americans to Make Their Wishes Known in Recognition of National Healthcare Decisions Day - April 16th, 2011.’

And of course you are all familiar with the two WSJ articles we highlighted last week on this very blog. See NHDD team member Christian Sinclair's "One Month Until National Healthcare Decisions Day" and "Wall Street Journal discusses POLST and Advance Care Planning" posts.

Know of other NHDD or advance care planning media mentions? Or has your organization been working hard to get the word out about NHDD? Keep us in the loop by emailing

Look for our second Advance Care Planning News Round Up on Thursday.



NHDD Insider Chats: Q&A with NHDD Executive Committee Member Kathy Brandt (Part 2)

Today, we’d like to fill you in on the rest of our insightful Q&A with long-time health care professional and advance care planning advocate Kathy Brandt. In part two, she shares her advice and a little about her personal advance directive experience. So you’ll find interesting tidbits and tips to take back to your communities and advocate for NHDD!

Q: What was it like when you first completed your advance directive?

A: I don't recall it being monumental. I understood why it was important and I did it. As a twenty-something, death seemed far removed. Redoing it once I became a parent seemed more serious and took more time, but felt far more relevant to my day-to-day life.

Q: Have you ever helped another person complete an advance directive? How was that experience different than when you completed your own?

A: I've discussed advance care planning and supported my mother, aunt and other relatives. I've also talked to consumers [potential patients] who've called the NHPCO HelpLine and were confused about the form, worried about the implications of completing one or not completing one. I don't find it particularly hard - could be because I am matter of fact about it and see it as a tool to help empower people to ensure wishes are honored.

Q: What would you tell others that are considering completing their advance directive but are intimidated?

A: When talking to the young adults in my office about advance care planning I emphasized what happens if you don't choose a surrogate decision maker. Each state has default decision maker laws which dictate who can make decisions in the event a person is incapacitated and didn't name a health care proxy. The idea of having their parents, who may live in another state and have different values, priorities and wishes make those decisions was a big motivator for some staff.

Kathy Brandt is the Senior Vice President, Office of Education and Engagement at the National Hospice and Palliative Care Organization (NHPCO). Kathy leads NHPCO’s educational programming, access initiatives, communications and marketing efforts as well as discipline-specific and interdisciplinary leadership initiatives. Kathy works extensively with the Council of States, which is comprised of more than 40 state organizations working to advance access to quality care at the state and local level. Kathy is also the leader of Caring Connections, an NHPCO initiative to develop and disseminate end-of-life education, engagement and outreach materials to consumers, caregivers and professionals. Started with funding from the Robert Wood Johnson Foundation, Caring Connections focuses on improving access to end-of-life care information and services to everyone facing serious illness, care giving, death and grief and encourages people to plan before a crisis.

Kathy has worked on national end-of-life initiatives for more than twenty years, focusing on professional, caregiver and consumer education, public engagement, care and service delivery model dissemination, diversity initiatives and research. Kathy currently serves on the American Society on Aging Board of Directors and is helping to lead the organization’s strategic planning process.

Want to learn more about Kathy’s support of NHDD and how you can follow in her footsteps? Tweet @Kathy_Brandt with questions or comment on this post, and we’ll make sure you get answers.



NHDD Insider Chats: Q&A with NHDD Executive Committee Member Kathy Brandt (Part 1)

2011 marks the fourth annual National Healthcare Decisions Day (NHDD) and we – the NHDD staff – are celebrating by working to ensure that April 16, 2011 is the best NHDD to date! In that spirit, we are touching base with some of our veteran supporters and asking for their perspectives on the NHDD initiative and mission. If you’ve been following this blog, you probably know that we’re also picking these highly respected healthcare professionals and NHDD advocates’ brains about their personal advance directive experiences.

Most recently, we caught up with National Hospice and Palliative Care Organization’s (NHPCO) Senior Vice President of Education and Engagement (and NHDD Executive Committee Member) Kathy Brandt. Kathy had so much to share with us about the NHDD initiative and framing the national debate on advance directives that we’re sharing her insights in a two-day Q&A feature. Here’s part one of our chat with the NHDD veteran supporter and advocate:

Q: [Kathy] you’ve been in the healthcare industry, particularly in the hospice field, for over 20 years. How has that fueled your dedication to the raising the public profile of advance directives and their importance?

A: Having worked at the hospice that cared for Terri Schiavo (when she was admitted to the program) and then working at NHPCO during the media frenzy during her last weeks of life, further intensified my commitment to advance care planning.

During the last weeks of Terri's life as her family’s heart-wrenching drama played out on national television, we received literally thousands of emails and calls each days from people wanting to know how to get an advance directive. Yet despite all this free publicity regarding the importance of documenting care wishes, the percentage of Americans who have completed an advance directive has not increased since the days before Terri died.

That is why NHPCO and I are committed to the NHDD initiative. Most people won't or can't talk about these issues - we need to promote this topic far and wide.

Q: As a member of the NHDD Executive Committee, how will you measure the growth and success of NHDD in the next five to 10 years?

I'd love to come to a time when everyone facing every developmental and life-milestone - sees advance care planning as a routine conversation. Marriage, birth of a child, moving, diagnosis of a chronic or life-limiting illness, divorce, graduation - these are all sentential events that would be wonderful triggers for these important conversations and the documentation of wishes. People should be asked about their wishes and who they want to make decisions every time they renew their driver’s license - like organ donation.

Q: With your aforementioned goal in mind, can you share your hopes for NHDD and advance care planning in 2011?

A: I have always believed that a big piece of our early NHDD work was in preparation for our Tipping Point. As described in Malcolm Gladwell's book, the Tipping Point comes at “the moment of critical mass, the threshold, the boiling point" of a movement or social phenomena that ultimately changes the culture of a group.

During those two weeks in March 2005 when the world was focused on the hospice in Florida that was caring for Terri Schiavo, I wondered if we had finally reached that Tipping Point in terms of public acceptance of and investment in advance care planning. However, research on the utilization of advance care planning has demonstrated that we absolutely aren't there yet. The recent fire storm around death panels is further proof that we have a long way to go. My hope is that folks who were appalled by the negative spin associated with advance care planning during health reform debates can be energized to engage their families, friends and communities in advance care planning this year.

Check out tomorrow’s morning post for part two of our NHDD Insider Chat with NHDD Executive Committee Member and NHPCO Senior Vice President Kathy Brandt.



Completing my own Advance Directive — Part 3 of 3

What instigated me to begin this journey of advance care planning at a young age and prior to personally experiencing serious illness?

In 1997, I was asked by an editor at the Washington Post Health Section to review several new books about hospice care, the subject of my specialization as a freelance newsletter editor. When I finished, I proposed another article: to undertake and to describe my own process of advance care planning to complete an advance directive, either a living will or durable power of attorney (DPOA) for health care decisions.

I would try to imagine and spell out what kinds of medical treatments I might want or not want in some future crisis when I was incapacitated and no longer able to express my preferences. Mostly, I wanted to see how difficult it would be—whether it was something ordinary people could do without discomfort. The whole process felt unnatural and uncomfortable, like a role-play exercise at a company training seminar. From the vantage of middle age and good health, trying to visualize and then discuss some undefined, distant future crisis just felt stiff. I couldn’t figure out how to bring the process to life until I decided to write an addendum, an attached advisory outlining my values as best I could express them and what would be most important to me regarding medical treatments and decision-making.

I completed my advance directive and then filed the article. But my editor promptly decamped
for Paris. His replacement found it unconvincing and it never saw the light of day... until now. So my hope is that highlighting my process will show that it is possible to complete an advance directive and live to tell the tale, and perhaps remind others with an interest in care at the end of life that they should bring that interest down to the personal level and do their own. For themselves and those who they love.

But I learned a few things about advance care planning along the way. I learned that a living will containing a laundry list of wanted and unwanted treatments for some distant future crisis is less useful than thinking about underlying values and then communicating them to someone we could represent them through a DPOA. I think a professional guide to the process could be a lot of help; otherwise, don’t feel surprised if it feels a little formal and stiff and unnatural.

This is the third part of Completing my own Advance Directive —  And Living To Tell The Tale of a series by Larry Beresford. Please refer to Part 1 and Part 2 if you are interested in reading the complete series.

Please consider sharing your experience to help the public understand the importance of advance care planning.



National Journal Features A Discussion Today On

Well, the title may sound incomplete and that's because it is actually incomplete.

A National Journal  event today, supported by the Regence Foundation Living Well At the End of Life can be viewed here.

The event is introduced as "the first in what we think is a ground breaking series of three events and polls around  palliative care."
Initial thoughts:
  • Amazing! We all need to talk more about palliative care to ensure more people can be empowered to ask for it from the point of a diagnosis with a serious illness.
  • Wait! Why is the event titled Living Well At the End of Life?
I wrote about the important distinction between palliative care and end-of-life care in November here and thought some main points should be highlighted again.

  • Palliative Care is not limited to care at the end of life
  • It is appropriate to try for a cure while having integrative palliative care
  • The hope is to include Palliative Care Specialists to manage pain and symptoms and facilitate patient-centered decision making and care at every part of a patient's experience with serious illness
Why is this important to distinguish? 

Mostly because while hospice care specializes in care at the end of life,  is different from palliative care because to start hospice,  (under the Hospice Medicare Benefit) a patient has to stop curative treatments. 
  • Hospice specializes in, and is exclusively for end-of-life care 
While the possibility of receiving care at home is a large benefit for hospice patients receiving care at the end of life, it is absolutely critical to understand that while hospice clinicians are trained in and often specialize in palliative care, hospice has differences from palliative care. As physician and Executive Director of the Center to Advance Palliative Care, Diane Meier recently stated in the PBS Video, Care vs. Cure "People can get palliative care whether they have ten years to live, ten months to live, ten weeks to live. In that there's no requirement that you have to give anything up in order to access it."

These are all important aspects to distinguish, so why is this on the NHDD blog and why didn't we have a complete title to this blog post?

This is featured on the NHDD blog because often advance care planning is described as decisions for end of life.  Just as palliative care is helpful to patients and families receiving end of life care, it is not exclusive to when we experience serious illness. So, while advance care planning does address healthcare decisions for end-of-life care, it's important to distinguish that the decisions are best addressed initially as we enter adulthood which Nathan Kottkamp discusses  here in a post about the history of NHDD.

Lastly, the title of the post... well, I couldn't decide if this was about hospice, palliative care or advance care planning. It's really about all of it, and since I only made it to minute 1:32 on National Journal  event, I realize that all of these distinguishing factors may be discussed even though I hadn't made it that far into the video stream. So the title's incomplete because it's all about the conversation, right? Hopefully our community can watch the session from today and continue to talk about all of these important factors.

As we say on Twitter,  Have The Talk early to advocate for patient-centered care,  healthcare focused on patient and family goals.




Completing my own Advance Directive - The Addendum

Completing my own Advance Directive—and Living to Tell the Tale Part 2 of 3 by Larry Beresford

As highlighted in Completing my own Advance Directive—and Living to Tell the Tale Part 1 of 3: In the end I went for the DPOA and named Rose as my agent, but it still felt incomplete. So I decided to write an addendum- an attached advisory outlining my values as best I could express them and what would be most important to me regarding medical treatments and decision-making. 

Reading it 13 years later, I can see the influence of my experience in hospice care, both as a writer and a patient care volunteer. I still feel the same way about these issues, so I can’t say the experience of planning for my death was a waste of time. Here are my nine values as I wrote them in 1998:
  1. To know the fullest and most complete truth about my medical condition and prospects.
  2. To have an opportunity to find peace, understanding and closure at the end of life.
  3. To receive all reasonable and appropriate comfort care measures when I am terminally ill, and to be kept clean, dry and warm.
  4. To NOT be maintained on ventilators or other physically invasive therapies unless they offered a reasonable chance of restoring me to a better state of health and functioning.
  5. To not be a severe, prolonged caregiving burden to my wife or family. If I become so, I would want them to consider alternative placement.
  6. Otherwise, I would like to be at home to the greatest extent feasible during a life-threatening illness.
  7. If I lose the ability to communicate or interact with and to recognize my loved ones (such as from advanced Alzheimer’s disease), I would not want medical measures to prolong my life, even antibiotics. But in the meantime, I would like full comfort measures and to be housed in a comfortable nursing facility with a rich activities program.
  8. I do not believe in and would not want euthanasia or assisted suicide, unless my suffering was obvious, extreme, relentless, long-lasting and untreatable. In that case, I would appeal to my family’s best judgment.
  9. Most of all, I want everyone involved in my care to be as honest and realistic and reasonable as they can be.
What instigated me to begin this journey of advance care planning at a young age and prior to personally experiencing serious illness? Find out in Completing my own Advance Directive—and Living to Tell the Tale Part 3 of 3. (Scheduled to be featured Friday March 11, 2011)

Please consider sharing your experience to help the public understand the importance of advance care planning.



Completing my own Advance Directive—and Living to Tell the Tale

Part 1 of 3 by Larry Beresford

When I set out to do my own advance directive, I obtained the standard documents from the organization that pioneered the living will back in 1967. I also sought out and obtained the California Natural Death Act Declaration form, my HMO’s advance directive package and the “Five Wishes” document. Then I made a date with my partner, Rose, who I was planning to marry.

We met at a North Beach coffeehouse to sit and talk about my feelings about medical care at the end of my life. Rose, who had come straight from her special education classroom in the neighborhood, wanted to know why these kinds of treatment decisions should be so fraught for people, although I assured her that in the chaos of the ICU, they often were. But in the end, she said she could be a tenacious advocate for my values. I had seen her temper and I knew how determined she could be when she thought it was important.

The next morning, I kept an appointment with my HMO primary care physician. We talked about my father’s recent, seven-week stay in a Kansas hospital for complications from cancer surgery. Like the six wise men of Hindustan who went to meet the elephant, none of his multiple physician specialists, each in charge of a different internal organ, had been able to speak for his overall medical state or propose a sensible care plan for my father as a person.

After a long course of treatment that felt fruitless to our family, he chose to go home with hospice care for the final 36 hours of his life. My doctor said in cases such as his, there is a need for a strong general internist to step in, negotiate between the specialists and advocate for the patient’s wishes, which she tries to do for her patients. She asked me to send her a copy of my completed advance directive and we both agreed that I should get more exercise and lose some weight.

I also spoke with some experts around the country and reviewed the 1998 public opinion poll, “The Quest to Die with Dignity,” by American Health Decisions, which documented that Americans believed it was important to plan for the end of life but were reluctant to actually do so. 

The experts I spoke with agreed that the living will, which is more of a laundry list of desired or unwanted treatments, was less useful than the Durable Power of Attorney (DPOA) for health care decisions, which empowers someone else to speak for me at the moment of truth. They also said the formality of completing a legal form was less important than the process of considering, clarifying and talking about my values. The larger conversation should happen with loved ones multiple times over months and years.
Bud Hammes, director of medical humanities at Gunderson Lutheran Medical Center in La Crosse, WI, suggested to me that the process could greatly benefit from a professional guide. But I thought that might be easier to find in La Crosse, which had become the advance care planning capital of the world. He also said it’s important to list what you would want in such situations, not just what you don’t want, for instance, a religious rite or a mechanism for family members to express their love and concern. I pictured a Cajun accordion trio playing mournful ballads at my bedside as my respirator was turned off.

In the end I went for the DPOA and named Rose as my agent, but it still felt incomplete. So I decided to write an addendum which will be featured in Completing my own Advance Directive—and Living to Tell the Tale Part 2 of 3 by Larry Beresford.  (Scheduled to be featured Wednesday March 9, 2011)

Please consider sharing your experience to help the public understand the importance of advance care planning.


1 Comment

The Origins of National Healthcare Decisions

Nathan Kottkamp is the Founder and Chair of National Healthcare Decisions Day.

Below is the short version of how National Healthcare Decisions came to be, and where it’s going.

I serve on several hospital ethics committees as part of my health law practice, and I am repeatedly confronted with a very disturbing issue. Time and time again, families, providers, and hospital administrators struggle to interpret the wishes of patients who never made their healthcare wishes known (or failed to complete an advance directive to record their stated wishes). These families and professionals do their best to advocate for what they believe their loved ones or the patient would want or is in their best interests, but they are inherently doing so without any guidance, and it is agonizing. I founded National Healthcare Decisions Day (April 16) because I know that we—both potential patients and healthcare providers—can do a much better job of making our wishes known and then honoring those wishes to avoid these very sad situations.

I was just 20 years old when I completed my own advance directive. I was in college, working for a healthcare decisions advocacy group. It was empowering to know that my loved ones knew my wishes. I now know that I was an outlier to have created an advance directive when I was so young, but the fact is we all should discuss and document our health care wishes, regardless of our age or current health status. Indeed, the three most famous cases regarding health care decision-making involved women in their twenties: Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo. Need a young male example? Lance Armstrong was 25 when he was diagnosed with cancer. Of course, beyond these examples, anyone who has been diagnosed with a serious illness and anyone with a large family (where there is an inherent possibility of disagreement) should complete an advance directive, particularly one that names a specific agent for healthcare decisions. It is also important for anyone in a long-term relationship, but who is not married, to appoint their loved one as their agent in writing because most states only recognized spouses and blood relatives as default decision-makers under the law.

Because of these examples and countless others affecting people of all ages, I have been working diligently with all those who share my vision of demystifying advance care planning and ensuring that it becomes a routine part of everyone's lives and healthcare experiences.

I founded Virginia Advance Directives Day in 2006, which enjoyed participation by every single hospital in Virginia (along with a host of other providers and organizations). We repeating this feat in 2007, and I knew we had a great model to take nationwide, which we did in 2008. Since then, NHDD has resulted in over million healthcare providers receiving advance directives education, over half a million members of the general public receiving education, over 14,000 advance directives being completed, and it has helped raise awareness of the importance of advance care planning; helped inspire activity that likely would not have taken place otherwise; and forged several new collaborative efforts. But, we’ve still got a long way to go to ensure that everyone has taken action to make their wishes know, so I hope to see NHDD grow bigger and better in 2011 and beyond.

As NHDD continues to grow, I hope to see more positive stories in the media about the shared belief (regardless of politics, religion, or ideology) that it is important to know a patient's wishes—whatever they may be—and to honor those choices to the greatest degree possible. I also look forward to a massive, ever-growing social media campaign—check us out on TwitterFacebookLinkedInFacebook Causes—and grassroots campaign to push NHDD out more broadly.

I hope that everyone will realize that advance care planning is a gift to loved ones. Studies suggest that most of us know that we should “Have the Talk” but only about a quarter of us have. I hope that people will mark their calendars for April 16, assemble their loved ones, and just do it. Sometimes we just need a catalyst. National Healthcare Decisions Day is it.

Nathan Kottkamp

Founder and Chair

National Healthcare Decisions Day

your decisions matter

1 Comment

1 Comment

Loving Conversations from the American Health Lawyers Association

The American Heath Lawyers Association is a large non-profit organization serving more than 10,000 members dedicated to sharing information and fostering dialog about the intersection of health and law. In 2009, they distributed a DVD to members called Loving Conversations. Thankfully they also made it easily available to the general public by posting it on YouTube. Watching all the videos takes about 47 minutes, so skip an episode of CSI and watch this with your family instead and invest in a future with a little less worrying about health care decisions. (And 2 bonus points to anyone who recognizes the lawyer/actor playing the youngest son. Please post in the comments if you recognize him.)

1 Comment