By Judith R. Peres, LCSW-C
Social Work Hospice and Palliative Care Network
The current effort to recast the health care “system” to deliver person-centered care is an important development. This movement toward person-centered care is an opportunity to showcase the multifaceted strengths of social workers. In particular, the psychosocial components of that care are the very ones that assist with shared decision making, ease caregiver burden, smooth transitions and help avoid hospital readmissions. Social workers are trained to provide for the psychological, social, emotional, and practical needs of people and their families.
There is general agreement that the goal of palliative care is to optimize quality of life through the control of physical symptoms and attention to individuals’ and families psychosocial and spiritual needs. One distinguishing factor of palliative care is the concept that care is delivered by an interdisciplinary team. Social workers are essential members of interdisciplinary teams and provide support to both people & families/caregivers and the team because of their practice knowledge. Social workers are at the forefront in caring for people facing advanced chronic illnesses and their families. They are key team players in hospice and palliative care programs, promoting quality psychosocial care, advocating for person and family concerns, building consensus in healthcare decision making, and supporting ethical practice. Social workers serve to help people find the best ways to discuss their illness with significant others and the health care team.
Tending to the psychosocial components of palliative care is critical in assessing and addressing the multidimensional nature of pain and suffering – the cognitive, emotional, social, spiritual and cultural experiences faced by people and their families. Social workers assist people in learning new ways of coping with the stress of advanced illness and help manage feelings of anxiety, fear, sadness, anger, worry or depression that can be associated with advanced illness.
Social work is known as the profession that focuses on strengths and building resiliency. Providing social work services on a team helps people and families recognize that it is a gift to grow old and know that, even when quite dependent on others, we can live a meaningful, comfortable life.
Judith Peres is a clinical social worker and Medicare and Medicaid policy analyst. Review the Social Work Hospice and Palliative Care Network for more information on social work and palliative care: http://www.swhpn.org/
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
[i] Harrington SE, Smith TJ: The role of chemotherapy at the end of life: “When is enough, enough?” JAMA 299(22): 2667-2678, 2008
[ii] Mack JW, Weeks JC, Wright AA, et al: End-of-life discussions, goal attainment, and distress at the end of life: Predictors and outcomes of receipt of care consistent with preferences. Clin Oncol 28:1203-1208, 2010
[iii] Keating NL, Landrum MB, Rogers SO, et al: Physician factors associated with discussions about end-of-life care. Cancer 116(4):998-1006, 2010
[iv] Keating NL, Landrum MB, Rogers SO, et al: Physician factors associated with discussions about end-of-life care. Cancer 116(4):998-1006, 2010
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.
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 5th 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.
Bruce Chernof, MD, FACP
President and CEO,
The SCAN Foundation
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.
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.Read More
By Judith A. Salerno, M.D., M.S.
Leonard D. Schaeffer Executive Officer
Institute of Medicine
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.
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.
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.Read More
By J. Donald Schumacher, PsyD
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.
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).Read More
What is Palliative Care?
A blog post from the Center to Advance Palliative Care
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.Read More
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.Read More