C-Change

No one wants to suffer. No one should have to.

Quality of life matters at every phase of life.

Specialized palliative care and hospice care can greatly increase quality of life for cancer patients.

In an ideal scenario, patients would be given all necessary information and opportunities to exercise the degree of control they choose over the health care decisions that affect them. Health care professionals would be trained to have these difficult conversations and to understand and communicate the benefits of palliative care and hospice. Patients and their loved ones would then have access to the type of care they choose.

Americans want this type of care, yet currently:

• 16-20% of patients receive chemotherapy within 14 days of death.[i]
• Fewer than 40% of patients with advanced cancer have realistic conversations with their providers about treatment options and alternatives.[ii]
• 65% of medical oncologists wait until there are no more non-palliative options to bring up hospice.[iii]
• Physicians caring for cancer patients have reported that they would not discuss end-of-life options with terminally ill patients who are feeling well, instead waiting for symptoms or until there are no more non-palliative treatments to offer.[iv]

Patients who actively participate in treatment decisions are more satisfied with their care and may have better outcomes. Fully informed decisions are more likely to lead to greater use of palliative care services and a longer use of hospice care – meaning individuals with cancer could live with less burden of suffering. We believe this vision can be made into a reality for all cancer patients.

C-Change is committed to making quality of life a greater priority throughout the continuum of care by working towards:

• A system that supports optimal and timely use of specialized palliative care and hospice care,

• A professional culture that understands the care options to improve quality of life, is supportive of the need to communicate options to individuals with cancer and their caregivers, and

• An informed population that is aware of the benefits of hospice and palliative care, and is empowered to ask for these services for themselves and their loved ones.

Through strategic partnerships and the collective power of the Assuring Value in Cancer Care Advisory Committee, C-Change is working with C-TAC and many others to create capacity to support the appropriate use of specialized palliative care and hospice care, and increase demand for these services by informing the public of the benefits and the ability to improve quality of life.

For more information about C-Change, its members and current initiatives, please visit http://c-changetogether.org/

Founded in 1998, C-Change is the only organization that assembles key cancer leaders from the three sectors — private, public, and not-for-profit — and from across the cancer continuum — prevention, early detection, treatment and quality of life

By Cynda Hylton Rushton, PhD, RN, FAAN, Johns Hopkins School of Nursing; & Virginia Tilden, RN, DNSc, FAAN, College of Nursing, University of Nebraska Medical Center

April 16 is (and has been since 2007) National Healthcare Decisions Day (NHDD). NHDD is a day to mark the week for all adults to mark their calendars, have the talk, and document the talk with an advance directive.

What talk?

The talk that someone has about the care they want during a serious, life-limiting or advanced illness.

Experiencing advanced illness can be an emotionally charged time of life when people (patients, families and health professionals) struggle with difficult decisions with little support or guidance.  Its all the more important, then, that we as clinicians understand what the person who’ll receive the care wants.

We know that nurses have long had a critical role in ensuring that care for those with serious, progressive illness is both person-centered and compassionate.  A recent poll released by the National Journal showed that a significant majority (60 percent) of physicians think that nurses and other health professionals provide excellent care during advanced illness.  (By comparison, just under half (49 percent) of physicians thought their own profession excelled in care during this time of life).  So, what can we — as nurses — do to help some of the most vulnerable and sickest in our society find their voice?

The first step is easy: watch this 3 minute video from NHDD: http://www.nhdd.org/

The second gets a little technical: let the person and his/her family know about the healthcare power of attorney, sometimes also referred to as a “health care proxy”.

As you saw in the NHDD video, a number of health crises (a coma or advanced stage condition such as cancer or Alzheimer’s) can hamper your ability to speak for your self.  When we think of patients and families, it’s vitally important that we know who the decision maker will be.

Think about this:

The person you’re caring for has had a stroke and can’t communicate.  Her son will be at the hospital shortly; her daughter is from out of town and flying in the next day.  Both are legally entitled to speak and act on behalf of their mother.  What do you do when the son arrives? What would you do if he disagrees with his sister regarding the course of treatment? Who will speak for your patient?

We understand that disagreements do occur and that the best way to address them is before a health crisis – by having the talk.  But the talk isn’t enough.  You also have to record it in an advance directive, which names and authorizes the person of your choosing to make health care decisions for you in the event that you are unable to speak for yourself.

The third step is to share an advance directive form with the person and family.  You can find the forms here.  Once it’s filled out, encourage the person to share it with family, loved ones, and medical staff.  Note that the person who is the substitute decision maker must agree to serve in this role and to keep their copy of the advance directive where they can access it

We are working with the Coalition to Transform Advanced Care (C-TAC) to promote and, where appropriate, develop resources that will help nurses and other members of the inter-professional care team provide person-centered care.  And person centered care starts with understanding what it is the person – not patient – in front of us wants: what are your goals and values?

The results might surprise us.

Find out more about NHDD (below) and how you can help get the word out: who will speak for your patient?

About the Authors

Cynda Hylton Rushton PhD, RN, FAAN is a Professor in the Nursing & Pediatrics at Johns Hopkins University; Core Faculty, Berman Institute of Bioethics and Program Director with Harriet Lane Compassionate Care.  Cynda also serves as Co-Chair of C-TAC’s Professional Education workgroup and on C-TAC’s Board of Directors.

Virginia Tilden, RN, DNSc, FAAN, is Dean and Professor Emerita at the College of Nursing, University of Nebraska Medical Center.  Virginia also serves in C-TAC’s Professional Education workgroup.

About National Healthcare Decisions Day

Now in its 5^th year, National Healthcare Decisions Day (NHDD) exists to inspire, educate and empower everyone – regardless of age or health status – about the importance of advance care planning and to encourage individuals to express their wishes regarding their health care choices. Visit www.nhdd.org to learn more.

About the Coalition to Transform Advanced Care (C-TAC)

C-TAC is a national non-profit, non-partisan alliance of patient and consumer advocacy groups, health care professionals and providers, private sector stakeholders, faith-based organizations, and health care payers with the shared vision that all Americans with advanced illness, especially the sickest and most vulnerable, will receive comprehensive, high-quality, person-centered care that is consistent with their goals and values and that honors their dignity.

To find out more about C-TAC, its members and action plan, please email CTAC@advancedcarecoalition.org and follow the Coalition on Twitter, @CTACorg.

The goal of a more effective and efficient system of care is straightforward – better care at lower costs. The path to that goal has proven far more elusive.

To meet these aims, we must focus on those who really need the system to perform better – people with advanced illness and functional limitation. We must speak with them on their terms, and build plans of care that appreciate them as people, not just as patients. Engaging individuals in decision-making about their life and health that upholds their dignity, independence, and right to self determination is the keystone in the arch of a better system of care. Unfortunately, when it comes to serving older Americans who face advanced illness, the acute-care oriented, cure-driven paradigm of our health care system fails to encompass the tools and skills necessary for spanning this arch. The way we talk to patients and their families must change. We must move beyond informed consent, the small print laundry list of medical procedure complications that patients must acknowledge via signature without really understanding benefits or risks, to informed discussions.

A structured, preference-based dialogue and subsequent planning is fundamental to helping people and their families make informed decisions so they can achieve desirable outcomes. For some, continuing to do everything medically possible to prolong life will be the path of choice for personal or religious reasons; these desires need to be fully respected and embraced, not merely accepted. However, for the majority of people with advanced illness, better care is not defined as simply more medical interventions. Rather, it is care that protects, preserves, defends, and extends their personal goals and preferences – often with less medical intervention and more quality of life-driven support.

Models most likely to meaningfully improve quality of life and the efficiency of health care delivery are those that both coordinate care among providers and actively engage people in planning and decision-making based on their needs, values, and preferences. We call this connection “Dignity-Driven Decision-Making” – which is the specific focus of The SCAN Foundation’s initiative to transform healthcare decision-making so that it explicitly includes quality of life, dignity, and self determination as key outcomes for all and particularly for those with advanced illness. Through this initiative, we seek to explore the full range of delivery models and structured approaches that build rigorous person and family involvement into decision-making centered on quality of life, not simply quality of health. An effective delivery model should have the following characteristics:

• Identify and serve a target population, specifically persons with advanced illness who have experienced a triggering event;

• Implement a structured approach to providing care;

• Charge providers to collaboratively develop and implement a care plan with the person/family, which is driven by the person’s needs, values, and preferences;

• Create and/or facilitate active connections between medical and supportive service systems;

• Focus on community service delivery and not be solely dependent upon inpatient admissions or activities; and

• Generate better person-level outcomes and systems savings.

The good news is that a range of current programs already demonstrate many of these characteristics, such as comprehensive geriatric assessment, shared decision-making, palliative care, and advance care planning. But even with enlightened providers who seek to overcome an acute-care focused medical model interested only in curative measures, the center of gravity for many of these efforts is still the provider rather than the person needing the service. While some people with advanced illness will be fortunate enough to encounter one of these programs with enlightened providers, most will not.

This must change. Dignity-Driven Decision-Making provides the opportunity to improve patient quality of life outcomes while reducing expensive health care interventions that may be unnecessary or even harmful. Dignity-Driven Decision-Making begins and ends with the seriously ill person’s quality of life as the basis for a better, more cost-effective delivery system.

To access the Dignity-Driven Decision-Making Innovations Colloquium Report, please click here.

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Bruce Allen Chernof, MD, FACP, currently serves as the President and CEO of The SCAN Foundation whose mission is to advance the development of a sustainable continuum of care for seniors.  The SCAN Foundation is one of the largest foundations in the United States focused entirely on improving the quality of health and life for seniors.

Previously, Dr. Chernof served as the Director and Chief Medical Officer for the Los Angeles County Department of Health Services. Dr. Chernof has also served as a Regional Medical Director for Medicaid and SCHIP programs at Health Net, a network model HMO.

Dr. Chernof completed his residency and chief residency in Internal Medicine as well as a Fellowship in Medical Education at UCLA. He earned his medical degree from UCLA and completed his undergraduate work at Harvard University.  Currently, Dr. Chernof is an Adjunct Professor of Medicine at UCLA.

As we become a nation with increasing numbers of older people, it’s common for talk to turn to such topics as how to fund post-retirement life and whether to sell the family home.

Rarely does talk around the dinner table turn to pain and end of life.

But a recent Institute of Medicine (IOM) report notes that managing pain is a fact of life for about 100 million Americans, roughly 43 percent of the adult U.S. population – many of them over age 65.

As someone who has dedicated my career to aging research and to improving geriatric care, I found two other statistics in the report sobering.

The report cites a survey of families who had a relative who recently died. They were asked a simple, but insightful question: Did the patient receive any or enough help with pain?

About one-third whose loved one died in a nursing home answered “No.”

When the question was posed to the relatives of patients who died in home hospice care, the percentage answering “no” dropped to 18 percent.

Pain management is challenging at any point in an illness or in any health care setting, but none more so than in the last stages of life. Hospice workers are more attuned to the palliative needs of patients with terminal illnesses, but even in this setting, families found there still was more that could be done.

I agree.

Easing pain during the course of a long-standing illness or its last stages can be fundamentally different than managing pain in other contexts. Unlike someone who is recovering from surgery for a sports-related illness (who indeed has pain relief needs), people with advanced chronic diseases often are coping with multiple, complex health conditions and endure much suffering. Spiritual and cultural issues also profoundly influence the way we choose to live out our lives with chronic illness.

From my perspective, in the best of worlds, patients near the end of life and those suffering with advanced illness would receive adequate and consistent pain management and the comfort care they desire regardless of their illnesses and no matter where they receive care.

We in the health professions are often deterred from providing adequate pain relief by the perceived risks of prescribing powerful yet effective pain medications such as opioids. Prescribed and monitored appropriately, such medicines can provide palliation and comfort. The last stages of life need not be defined by pain and suffering.

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Judith A. Salerno, M.D., M.S., is the Executive Officer of the Institute of Medicine of The National Academies.  A geriatrician, Dr. Salerno is vitally interested in improving the health and well-being of older persons, and has designed public-private initiatives to address aging stereotypes, novel approaches to support training of new investigators in aging, and award-winning programs to communicate health and research advances to the public. Dr. Salerno also serves on numerous boards and national committees concerned with health care issues ranging from the quality of care in long-term care to the future of the geriatric workforce.

By J. Donald Schumacher, PsyD

National Hospice and Palliative Care Organization (NHPCO)

The men and women who care for the dying are special people. They ensure that people facing serious and life-limiting illness do so with support, dignity and compassion. They support families and help them step out of the shadow that death so often leaves. Nowhere in the world are there professionals or volunteers more proficient at providing high quality, patient and family-centered care at the end of life than our nation’s hospice and palliative care community.

As the experts, we must respond to the challenges and be willing to adapt to the changing world around us. Threats to reimbursement, regulatory scrutiny, quality mandates, growing competition, a more complex patient population and more… the stressors we face are many. And amidst all this, one of the most important tasks ahead of us is the creation of a more seamless continuum of care that is responsive to the needs of our aging society.

For some, there is a fear that organizational or industry-wide changes—whether initiated within our field or from external forces—seem to go against the values held dear by many of us. It is important to remember that many of us got into this work in the early years because we insisted that the care of the dying be done differently. We must tap into the strength and creativity that was once a mainstay in our community as we embrace the challenges of today.

In the face of change, what matters the most and what we can never take for granted is our commitment to providing quality care to patients and families. Ultimately, it all comes down to care at the bedside. That must never be forgotten.

From my vantage point of President and CEO of the National Hospice and Palliative Care Organization, I am fortunate to see working being done by a range of organizations in diverse communities throughout this country. I would like to offer some specific thoughts about what will be required from all of us as we continue to forge a seamless continuum of care:

• As a national community dedicated to caring for those with serious and life-limiting illness, we must be able to skillfully engage in respectful discourse that recognizes divergent opinions and points of view, but is always guided by the best interests of the patient and family we serve.

• The skills that brought many of us to this point in our history may not be enough to lead successfully in our changing society. It is critical that we develop strategies that will allow us to guide our organizations through the changing environment and prepare those who will lead in the future.

• It is critical that we identify innovative approaches that expand the reach of hospice and palliative care as we actively engage in the creation of a seamless continuum of care. As the recognized experts on palliative care in this country, hospice providers must be at the forefront of the development of the care continuum.

What I have described here requires more than perseverance and passion. It requires trust. Trust at the organizational level as well as trust among our broader national community.

If we allow our fears to keep us from exploring and embracing necessary change, or to become inert as an industry, we are not only hurting ourselves, but we are also hurting the many patients and families that desperately need the care and services that we are the best in the world at providing.

I have faith that we will continue to improve and expand on our ability to care for patients and families and our accomplishments of the past will only serve to inform all that we will accomplish in the future.

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For more information about hospice and palliative care, please click here.

J. Donald Schumacher serves as the president/CEO of NHPCO, the National Hospice Foundation, and FHSSA, and as president of the Hospice Action Network’s board of directors. In addition to his service at the national level, Dr. Schumacher was the president/CEO of The Center for Hospice and Palliative Care (Buffalo, NY) from 1989 to 2002, and president/CEO of Hospice West (Waltham, MA) from 1978 to 1989. He was also the founder and president of one of the country’s first HIV/AIDS hospices, The Hospice of Mission Hill (Boston, MA).

When someone is diagnosed with a serious illness, life can change in an instant. Suddenly there are appointments to manage, symptoms to cope with and many tasks to juggle. It can be overwhelming. Sometimes it is hard to know where to turn for help. Palliative care is an important option.

Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illness. It focuses on providing patients with relief from the symptoms, pain, and stresses of a serious illness. The goal is to improve quality of life for both the patient and the family.

Provided by a team of doctors, nurses, and other specialists who work together with a patient’s other doctors, palliative care offers an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.

Palliative care treats people suffering from any serious illness, including cancer, cardiac disease such as Congestive Heart Failure (CHF), Chronic Obstructive Pulmonary Disease (COPD), dementia, kidney failure, Alzheimer’s, HIV/AIDS and Amyotrophic Lateral Sclerosis (ALS). Symptoms of these diseases, such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping can be relieved with palliative care.

The point is to relieve suffering and maximize quality of life. Palliative care does this in a number of different, yet crucial ways:

• Providing expert treatment of symptoms such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and many other symptoms;
• Devoting time to listen to you, answer your questions about your disease and treatment options and matching treatments to your individual goals;
• Helping to coordinate and share information with all of your other doctors and health providers.

Palliative care keeps the patient and family from having to be their own “quarterback”. It helps people gain the strength to carry on with daily life, and it improves the ability to tolerate medical treatments. It also enables patients to have more control over their care by improving their understanding of treatment options.

Palliative care makes it easier to concentrate on what is important each day – whether that means feeling well enough to get through a treatment, or attending a special event with family and friends.

A recent public opinion poll revealed that when people understood what palliative care had to offer, 92% said they would consider it for themselves or a loved one. Also 92% said they thought it important that palliative care services be made available at all hospitals for patients with serious illness and their families. Unfortunately, 70% said they were not at all knowledgeable about palliative care.

The good news is that hospital-based palliative care is growing at a very rapid rate. Services are also available in some outpatient settings and in the home. To find out more about palliative care in your area, visit the “How to Get Palliative Care” section on www.getpalliativecare.org.

Adapted from http://www.tedeytan.com/2011/11/12/9573

I wrote this blog post during the 4th year of the of ”Engage with Grace” which is about having conversations to know the values of ourselves and our loved ones when it comes to end of life care, and end of life living, really.

What was different this time what that I did more than just re-posting the text that was prepared for us (and if you want to see that, it’s here), I am reporting after 4 years that in 2011 I have had the conversations. And I’ve had them in part because of this campaign, in part because of Suze Orman, who’s told her callers this year that they get an automatic “F” on their financial grade when they don’t prepare for those who come after them.

And….it’s not easy, starting with the conversation, and all the way through to execution. This conversation is co-mingled with the financial one, I don’t think they can be separated. The bummer is that once you have the conversation there is much work to do to document it. Some financial institutions make this process easy, many do not, it generates lots of paper. Paper that is not conveniently accessible, paper that’s hard to understand, hard to put on file with your health care provider.

However I did it. And I emerged with better knowledge of what those around me want, and documentation of what I knew in my head, but hadn’t codified. And a ton of dissatisfaction with the process and motivation to make it easier for others! I think the current state of the process is simply a reflection of what people like Alex Drane (the originator of “Engage”) experienced in her own situation – when these things cannot or are not discussed during the process of care delivery, they haven’t been discussed during the design of the care delivery system, either.

A search on iTunes for app to help out with this turned up nothing useful – interesting that out of 500,000 apps, not a single one about something this important. I also know from my electronic health record experience that this function is typically not as robust as ordering medicines, for example. Online, there’s just a jumble of PDF’s and word processing docs in arcane language…

I am just one person/patient and from my experience I learned:

• “Advanced care” is NOT “Advanced health care”. It IS “Advanced health care + Advanced financial care” – the two seem siloed from each other and they shouldn’t be. Where are the financial institutions / organizations in this conversation?
• I think there’s an assumption that the challenge is having he conversation about life and it’s end. I’m not sure I agree. The challenge for me is making it easy to act on that conversation.

Fortunately, as with everything I do or have ever done, it’s easy to find out how to solve these problems – talk to patients ant their families.

As I wrote on my blog, “The right answer is to involve patients in every decision.” And we don’t mean every health care decision they make for themselves and their families. We mean every decision that is made around how the health (and financial) systems are designed to support them.

A few years ago we (that’s Matt Holt, Founder of Health 2.0 and Alexandra Drane, President of Eliza Corporation) met for dinner – the kind of dinner where food is the side and the main course is a fully engrossing conversation that barrels along a mile a minute. We wound our way onto the topic of end of life care – and jointly bemoaned how terribly our country deals with it. We shared statistics – facts like 70% of people want to die at home, but only 30% do. And then – because life is about a lot more than statistics, we started sharing our stories.

These are the stories that – we’ve since learned – so many people have. Stories of weak, aging parents who kept getting medical care when the prognosis suggested otherwise. Stories of families torn apart because they couldn’t agree on a care plan for a loved one who couldn’t speak for themselves. And my story, the story of my sister-in-law, Za, which you can see here.

Based on this conversation, we launched a non-profit, viral movement called Engage With Grace. The idea behind Engage With Grace is simple – we as a nation need a tool to help get these conversations started. Something that can be shared easily with family, friends, colleagues – anyone really. At the heart of the movement is what we call The One Slide – just five questions about our care preferences each of us should be able to answer for ourselves, and for our loved ones, before it is too late to decide. Preferences we should then commit to supporting – no matter what the opposition. And we asked a whole lot of people to answer the questions for themselves, and then spread the word.

The response has been wonderful, and humbling. People are willing — even aching – to have these conversations, and they are grateful to have a way to broach the topic in a non-threatening way.

It’s this kind of public engagement spirit that we are honored to bring to C-TAC. Though we haven’t spent a dime on marketing, it’s estimated that over a million people have been exposed to Engage With Grace and The One Slide – whether through events, our annual blog rally (the first of its kind, as far as we can tell) that’s gotten hundreds of bloggers to simultaneously post Engage With Grace-related content over Thanksgiving weekend, clinical textbooks and training programs, or the mainstream media.

And here’s what we’ve learned from people who have shared their experiences:

It’s not an easy conversation… but personal stories help broach the topic

• “Your story in the Boston Globe a day before Thanksgiving could not have come at a better time. I had decided to talk to my aging father about his wishes for the end of his life, and to do it as we were driving down to a family gathering where his brother would be. Introducing the topic with Za’s story made it much easier. I did not second guess myself. I did not feel I was introducing the subject too soon. As it was he found it all very interesting and told my uncle that we had discussed important things like end of life care…. Now, I say to him, that is out of the way, let’s go back to planning for the rest of your life. He is 91 years old.”

These conversations can be very revealing, even when you think you know your loved ones:

• “I am not yet 30 and expect to have many healthy years ahead of me, but my wife and I discussed the questions on the one slide anyway. I learned so much about her during this discussion, including that she does not want me to be her advocate in an end-of-life-situation. She would like one of her siblings who has an MD to make the difficult choices because he would understand both her needs and the medical situation. I want to make these decisions well in advance of an end-of-life situation. If I don’t, I may not have the opportunity to convey my wishes to my loved ones, and they might always wonder whether or not they chose the right course.”

People are motivated to do this to ease the burden on their own families:

• “My mother decided not to receive the care that had a small chance of prolonging her life but would also have left her with irreversible consequences and a shadow of her former self. She asked me to help her have a “good death.” Our family and her doctors all came down on the right-hand side of the “One Slide” continuum, wanting her to try anything to live. She didn’t have a valid advance care directive, but luckily she was still lucid and able to sign all the papers. We all knew what she wanted, but it was still difficult to let her go. I am still thankful that I helped her, but also that I was not left in a position to make the decision for her.”

Medical providers are using it as a conversation starter:

• “I’m a physician in an ICU and I can’t tell you how many times I’ve wished families had spoken about end of life, before the actual end of life. It’s painful that many times loved ones are kept alive with no hope of returning to a meaningful quality of life, while families fight over what “mom” or “dad” would have wanted. Clinicians do the best they can (some admittedly, better than others) to ride the emotional roller coasters with families, but it’s difficult to ignore the often needless suffering of their loved ones.”

We couldn’t have said it better ourselves.

NHDD was borne out of Virginia Advance Directives Day in 2006, which enjoyed participation by every single hospital in Virginia (along with a host of other providers and organizations). After 2007, with another year of 100% participation by state hospitals, the Virginia experience was used as a model to launch NHDD in 2008.

NHDD is great for many reasons.  Among others, it has resulted in wonderful collaborative efforts within communities and among organizations that might not have occurred otherwise.  NHDD is also great because it is flexible.  There is no cost to participate and there is no required way in which to participate—in fact, creativity is encouraged.  Among other things, the ways in which to participate in NHDD include:

• First and foremost, lead by example…be sure you have thoughtfully considered and made your own healthcare decisions known.
• Next, make sure everyone in your organization is informed about NHDD (including staff, board of directors, volunteers and others) and ask for their involvement to promote NHDD in your community.
• Partner with other local organizations to promote NHDD. You will reach and benefit more people if you do this with others than alone!
• Distribute NHDD promotional materials and advance care planning educational brochures at upcoming community events or health fairs.
• Provide a link on your organizational Web site to www.nhdd.org.  This is a national Web site with a variety of information for the public and providers on advance care planning.
• Follow NHDD in the social media world: Twitter, Facebook, LinkedIn

Among other things, the NHDD website offers a host of resources for both the public and providers, including an insightful blog that offers a variety of perspectives on advance care planning issues.

Ideally, all CTAC participants will participate in NHDD in one way or another, and vice versa.  If you haven’t done so already, confirm your participation in NHDD by clicking here.

We’re in this together, with a lot of work to be done.  The more we can collaborate, the better.

Other ways to get involved:

• Set up an exhibit about NHDD at your main entrance and offer information about advance care planning as people come by.
• Partner with other local organizations to promote NHDD. You will reach and benefit more people if you do this with others than alone!
• Distribute NHDD promotional materials and advance care planning educational brochures at upcoming community events or health fairs.
• Sponsor a community event or “town hall’ meeting about advance care planning. Big events are more likely to generate media coverage than small presentations and they offer an opportunity for more in-depth dialogue with your community. (Suggestion: Ask your local bar association and healthcare organizations for volunteer speakers and/or ask local politicians to attend and publicly sign their own advance directive.)
• Partner with local retail businesses by asking them to place a promotional flyer about NHDD in every bag.
• Send out a press release about your NHDD activities and/or events to your local media.
• Publish an Op Ed, letter to the editor or a feature story about the importance of advance care planning in your local newspaper.
• Print advertisements in your local newspaper or other local publications, resource guides and newsletters about NHDD activities. (Suggestion: Ask to print the advertisements as public service announcements and see if they will also publish a copy of your state’s advance directive form.)
• Offer to provide a guest-speaker on health-related radio or TV programs about advance care planning and NHDD.
• Distribute flyers about NHDD in local physician offices and other strategic locations such as elevators in public buildings.
• Distribute information to patients at healthcare facilities with their mid-day meal.
• Encourage your state leaders to establish a state-sanctioned, secure on-line advance directive registry.
• Mention NHDD in your organization’s/facility’s telephone on-hold recording.
• Be creative about the topic of advance care planning.

It also shows that advance care planning can improve caregiver quality of life, and reduce emotional trauma and depression in family members.[ii] [iii]

Unfortunately, these discussions often either do not occur or, if they do, are far too often marked by confusion and disconnection among patients, families and clinicians. Recording these conversations in advance directives has also proved problematic for a number of well documented reasons: most Americans have not completed an advance directive and, if they have, there is no guarantee that the directive will be accessible when clinicians need it. There are signs, however, that things might finally be changing.

In a recently published paper, C-TAC member Allina Hospitals and Clinics has demonstrated that Disease Specific Advance Care Planning (DS ACP) significantly increases the percentage of individuals who engage in the planning process. DS ACP has been shown to ensure that individuals receive the care they specify and better prepare health care proxies (families and caregivers) to make care decisions for their loved one.[iv]

While challenges remain Allina has demonstrated that an interprofessional model of advance care planning based on the Respecting Choices program — which has achieved considerable success in La Crosse, Wisconsin and elsewhere – can be a valuable service for improving care for individuals with advanced chronic conditions in a large health system.

C-TAC also congratulates Allina as it begins to rollout an innovative multi-year program, Late Life Support Care, designed to better coordinate support for patients in the later stages of illnesses such as cancer, heart failure, and Alzheimer’s. C-TAC looks forward to continuing to partner with Allina to improve advanced illness care and empower people to plan for their care.

You can find out more about the Late Life Support Care program here