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Poof! You’re a Caregiver

Hospice nurse and social worker, Katie Ortlip, came to her writing partner’s, Jahnna Beecham, aid when her father was dying. The two wrote the bookLiving with Dying: A Complete Guide for Caregivers as an instruction guide to understanding the dying process as a caregiver. Read an excerpt of Jahnna’s story below to dive into a firsthand account on the struggles and realizations about personal caregiving.

When I was suddenly thrust into the job of caregiver for my 90-year-old father whose long dormant prostate cancer had metastasized to his bones, I wanted to run. I’d already spent the previous eight years visiting my parents four or five times a week, going with them to every doctor’s appointment, including them in family dinners, outings, and celebrations, and sitting diligently by their sides when they were each in the hospital. Wasn’t it my brother’s turn?

I dove head first into the role of full-time caregiver and instantly became a frazzled lunatic. Dad was in pain, Mom was upset and confused, and I didn’t know how to help. The drugs Dad was given just made him loopy—he kept trying to leave the house through the fireplace. His regular doctor was on vacation, so I was frantically racing from new doctor to new doctor trying to get him some relief. He endured X-rays, MRI’s, and visits with cancer specialists while on heavy meds that made him unable to walk, get on the X-Ray table, or transfer from a wheelchair to my car. And still he was in pain.

I ran from my house to my parents, to my work, to school to get the kids, to the grocery store, to the drugstore, to my parents again, and back home. I had now added another full-time job to my day and in an effort to find more time, I cut out everything in my life that made me happy and healthy. I gave up my morning walk with my friend, weekly yoga class, and fun time with my kids. I grabbed handfuls of chocolate, potato chips, peanuts, and crackers (Mom’s five food groups) from her kitchen and gained 15 pounds, shouted at my parents and kids, and made no one happy.

Lucky for all of us, when Dad was put on hospice, my friend Katie Ortlip became his hospice social worker. Within 24 hours, he was assigned a wonderful nurse, his meds were adjusted (added 4 advil every 8 hrs. and reduced opioid dose), the equipment we would need for the next six months arrived, and Dad was finally pain free. I stopped panicking. Besides taking care of Dad, Katie O (as she is called in the hospice community) talked to me about the importance of taking care of myself. That included starting walking again with my friend, taking time to eat right, taking time for my family and friends, and hiring help.

Katie also gave me some quick tips to help me “Be here now.” Take Time to breathe––inhaling on a count of six, holding it, and then exhaling on six. Always sit when visiting my parents (This says, “I have time for you.”) Make sure the chair is close enough to my hard-of-hearing parents so I don’t have to shout, which automatically tenses your body.  Bring a healthy lunch or snack. Take time to eat, sitting down. (Notice the constant advice to “take time?”) Identify my father’s true needs—a driver for appointments and someone who will take time to listen to their concerns. Those simple tips helped me through Dad’s last months, days, and hours, giving me time to just be with my father. With the help of Katie and hospice, my father died in his own bed, surrounded by those he loved.

As I write this, I’m now caring for Mom, who is 93 and has dementia. She has moved in with my husband and me, which adds a whole new set of challenges, but this time I’m taking time to breathe and eat right (I’ve lost 30 pounds). And this is what I now know to be absolutely true:

  • Your loved one’s illness will never happen at a convenient time.
  • You won’t have enough time or money to help out the way you would like.
  • Just when you think you’ve got all the caregiving solved, something will happen to make it all fall apart and you’ll have to start over.
  • You will probably quarrel with a close family relative about how to give the best care possible.
  • At times you may feel overwhelmed by grief.
  • There will be moments when you will probably feel resentment followed quickly by enormous guilt.
  • You will start sacrificing your health for your loved one’s.
  • You might reach a point where you are burnt-out and absolutely certain that you cannot go one more day.
  • And if you don’t reach out to your community—friends, relatives, doctors, church, community center, and hospice, you will risk destroying your own health.

It truly does take a village. My village was, and still is, my husband, my friends, hospice, and Katie Ortlip.

Jahnna Beecham
Co-author with Katie Ortlip, RN, LCSW
Living With Dying: A Complete Guide for Caregivers
Available: Amazon.com and Livingwithdying.com

Bio: Jahnna Beecham most recently edited National Geographic’s Science Encyclopedia, which was released in the fall of 2016. Under the pen name Jahnna N. Malcolm, Jahnna Beecham and Malcolm Hillgartner have written more than 130 books for juveniles and young adults for Scholastic, Simon & Schuster, Random House, HarperCollins, Bantam and others.

Cambia Health Foundation Announces 10 New Sojourns Scholars to Advance Palliative Care

Elite group of physicians and nurses demonstrate strong leadership potential and commitment to expanding palliative care.

PORTLAND, Ore. (Sept. 20, 2017) – The Cambia Health Foundation has announced the acceptance of 10 new physicians and nurses into the Sojourns Scholar Leadership Program, the Foundation’s signature program to develop emerging palliative care leaders. With this new cohort, Cambia has now committed $7.2 million to cultivate 40 Sojourns Scholars from across the country who are working to advance palliative care.

The Sojourns Scholar program addresses a critical workforce development need and supports access to palliative care services. According to a 2016 report in the Journal of Palliative Medicine, “One-third of U.S. hospitals report no palliative care services of any kind, and access to palliative care in community settings (home, nursing home, assisted living) is limited for people who are not hospice-eligible. As a result, most people with serious illness are unlikely to receive the care they need throughout their course of illness.” Addressing these issues requires leadership, and by creating the Sojourns program, the Foundation has taken an active role in shaping the future.

The Sojourns Scholar Leadership Program is an initiative designed to identify, cultivate and advance the next generation of palliative care leaders. The new cohort was chosen following a rigorous selection process centered on their commitment to advancing the field of palliative care. Each scholar receives a two-year, $180,000 grant to support research, clinical, educational or policy projects. Scholars also receive one-to-one mentoring support and leadership training.

“The Cambia Health Foundation is focused on improving the consumer experience from birth through completion of life. Palliative care is inherently person-focused, and investing in future leaders ensures that people and families facing series illness are supported,” said Peggy Maguire, president and board chair, Cambia Health Foundation. “It is our hope that the seed that has been planted with these future leaders will inspire a workforce that delivers patient- and family-centered care across the entire nation.”

Listed below are the 2017 Sojourns Scholar Leadership Program Grant Recipients

  • Valerie Cotter, Nurse Practitioner, Johns Hopkins University School of Nursing: Advance care planning for primary care providers education program: Improving the quality of care for older adults with dementia
  • Andrew Epstein, Physician, Memorial Sloan Kettering Cancer Center: Integrating values-based advance care planning in a cancer center’s palliative care initiative
  • Matthew Gonzales, Physician, Providence Institute for Human Caring: Charting a course to a person-centered heath record
  • Vanessa Grubbs, Physician, University of California, San Francisco (UCSF): Integrating advance care planning into usual dialysis practice
  • Stephanie Harman, Physician, Stanford University School of Medicine: Harnessing machine learning to improve palliative care access
  • Debra Lotstein, Physician, Children’s Hospital Los Angeles/Keck School of Medicine, University of Southern California: Maximizing the use of home-based care for children with serious illness
  • Phillip Rodgers, Physician, University of Michigan: Palliative care in alternative payment models
  • Tatiana Sadak, Nurse Practitioner, University of Washington: Web-based dementia palliative care assessment and resource hub
  • Margaret (Gretchen) Schwarze, Physician, University of Wisconsin: National dissemination of a communication tool to increase access to palliative care for surgical patients
  • Jennifer Seaman, Nurse, University of Pittsburgh: Development and testing of a nurse-led intervention to ensure timely interdisciplinary family meetings in the ICU

To learn more about the individual scholars, please see the Sojourns Scholar page on the Cambia Health Foundation website.
Sojourns Scholar Leadership Program National Advisory Committee

  • Chair: Steve Pantilat, Director of Palliative Care Program, UCSF
  • Randy Curtis, Co-Director, University of Washington Palliative Care Center of Excellence
  • Patricia Davidson, Dean, the Johns Hopkins School of Nursing
  • Betty Ferrell, Director and Professor, City of Hope
  • Jean Kutner, Professor of Medicine and Associate Dean for Clinical Affairs, University of Colorado School of Medicine, Chief Medical Officer, University of Colorado Hospital

About Cambia Health Foundation

Based in Portland, Ore., Cambia Health Foundation is the corporate Foundation of Cambia Health Solutions, a total health solutions company dedicated to transforming the way people experience health care. Founded in 2007, Cambia Health Foundation awards grants in three program areas: Sojourns (Palliative Care workforce and leadership development, quality, access and awareness), Transforming Health Care and Children’s Behavioral Health. The Foundation has funded over $51 million in grants to advance patient- and family-centered care for all. Learn more at www.cambiahealthfoundation.org, and follow us on Twitter: @CambiaHealthFdn.

A One-On-One with Extremis’ Dr. Jessica Zitter

In September 2016, Netflix released an original documentary, “Extremis”; a 24-minute account of the end of life experience in an ICU setting. The AAHPM member featured in the documentary, Jessica Zitter, MD, recounts her journey to becoming a hospice and palliative medicine physician and her idea for the documentary.

“In 2009, I realized the need for a movie addressing the state of dying in the Intensive Care Unit.  I had just seen “The Waiting Room,” a documentary which depicted the humanity and suffering of patients in the ER of Highland Hospital, the county hospital for Oakland, California.  I had just started working there a few months earlier.  I was blown away by the film’s rich visuals and gripping stories.  I wanted to bring that same lens to the issue of medical decision-making in the Intensive Care Unit. In this high-stakes environment, dying patients are often put on what I call the “End of life Conveyor Belt:” lined up for default high-technology life-prolongation, often without their consent or understanding.

It was a topic I couldn’t stop thinking about — although it hadn’t started out that way.  When I was a young attending in the ICU at University Hospital in Newark New Jersey, I was all about life-prolongation, always seeking that high-technology heroic rescue.  But an awareness was dawning that something wasn’t quite right.  I just didn’t know exactly what.  Then in 2003 the burgeoning Palliative Care movement found me, and rescued me from my growing moral distress.  By a stroke of luck, I happened to work at the University of Medicine and Dentistry of New Jersey (now called New Jersey Medical School), one of only four institutions to receive a grant from the Robert Wood Johnson Foundation to improve communication in ICUs.  These grants were part of RWJ’s larger initiative called Promoting Excellence in End of Life Care, run by our own Dr. Ira Byock. They were awarded in March 2003, and I was hired at UMDNJ in May of the same year.

I knew nothing about this grant until I was introduced to the members of the “family support team,” the precursor to what would become the Palliative Care team years later.  I saw them roaming the rooms of our ICU, clipboards in hand, asking patients questions I would never have thought to ask: did they understand what was going on, what was important to them, were they in pain?  Although I was initially resistant to the team’s remonstrations – “Why are you putting that catheter into a dying patient without telling her family she is dying?”- I quickly realized they were raising critical issues. Before I knew it, I was a convert. Under the guidance of Pat, the advance practice nurse who led the team, I began to practice more patient-centered care, and later passed my Palliative Care boards.  Over the ensuing years, I’ve become convinced that the Palliative Care toolbox is absolutely crucial to patient-centered practice in the ICU.

After seeing “The Waiting Room” I approached the director, Peter Nicks, and asked him if he would be willing to put a face on the suffering of patients in the ICU.  There were so many patients receiving non-beneficial and even harmful treatment, I told him. Pete, busy on another project, introduced me to Dan Krauss, who went on to direct “Extremis.” Dan, although an outsider to medical culture, was able to bring incredible sensitivity and insight to this very complex world.


I’m thrilled, and a little astonished, at the response to the film.  The initial Netflix trailer went viral, garnering an unprecedented 5.5 million views in the first three days. I believe that this indicates the potential for change in both the lay and medical communities. I am in the process of creating a teaching curriculum for medical professionals and trainees which will focus on some problematic areas within our current medical culture, particularly in the ICU, and begin to explore structural solutions for change. I hope soon to be able to provide this curriculum to the many medical schools and communities contacting me with interest in using the film in a teaching capacity.

I’ve been spending the last year working hard on a book about these issues, Extreme Measures.  The book will be published by Penguin-Random House on February 21, the day before the AAHPM conference in Phoenix.  My hope is that both the book and the movie will serve to support this movement and help show us all the need for change in the way we approach death and dying—both the lay public and the medical professionals who, like me, may have been blinded by their training.”

AAHPM will hold a book signing with Dr. Jessica Zitter at the Annual Assembly on Thursday, February 23 at 5:30pm in the Exhibit Hall. Copies of her book “Extreme Measures; Finding a Better Path to the End of Life” will be sold at the AAHPM Resource Center at Assembly.

Highlights of the July Issue of the Journal of Pain and Symptom Management

Listed below are a few articles from the most recent issue of the journal:

Special Series on Measuring What Matters

Assessing Emotional Suffering in Palliative Care: Use of a Structured Note Template to Improve Documentation

Sangeeta Lamba, Ana Berlin, Rebecca Goett, Christopher B. Ponce, Bart Holland, Susanne Walther, and the AAHPM Research Committee Writing Group

Original Articles

Dexamethasone for Dyspnea in Cancer Patients: A Pilot Double-Blind, Randomized, Controlled Trial

David Hui, Kelly Kilgore, Susan Frisbee-Hume, Minjeong Park, Anne Tsao, Marvin Delgado Guay, Charles Lu, William William, Jr., Katherine Pisters, George Eapen, Frank Fossella, Sapna Amin, and Eduardo Bruera

OnabotulinumtoxinA Improves Pain in Patients with Post-Stroke Spasticity: Findings from a Randomized, Double-Blind, Placebo-Controlled Trial

Jörg Wissel, Vaidyanathan Ganapathy, Anthony B. Ward, Jörgen Borg, Per Ertzgaard, Christoph Herrmann, Anders Haggstrom, Mohamed Sakel, Julia Ma, Rozalina Dimitrova, Antony Fulford-Smith, and Patrick Gillard

Fentanyl Pectin Nasal Spray versus Oral Morphine in Doses Proportional to the Basal Opioid Regimen for the Management of Breakthrough Cancer Pain: A Comparative Study

Sebastiano Mercadante, Federica Aielli, Claudio Adile, Andrea Costanzi, and Alessandra Casuccio

To access the articles, you must subscribe to JPSM or be a member of the American Academy of Hospice and Palliative Medicine (AAHPM). For further information on the Academy, call 847.375.4712 or visit aahpm.org.

Submitted by: David Casarett, MD MA, Senior Associate Editor, JPSM

President Crossno’s Letter to American Medical News

Letter to American Medical News

January 6, 2012

Re: Handful of States Promise Physicians Online Access to Advance Directives, posted January 3, 2012 on amednews.com http://bit.ly/vFKMvx

When very sick patients are unable to express their wishes toward the end of life, nothing is more heartbreaking for doctors and loved ones than not knowing what those wishes are. It’s up to grieving and frightened family members to try to recall a past conversation, or remember whether there’s an advance directive, and if so, how to put their hands on it. Online registry programs for advance directives that give doctors access to this information would help ensure that we meet our patients’ wishes and that we don’t leave family members always questioning the decisions they were forced to make.

Patients need to hear from their doctors the importance of advance directives. They need to know that an advance directive can be changed, and that it can direct doctors to stop aggressive life-saving treatments, or continue them. Most important, an advance directive needs to be readily accessible when you need it. The American Academy of Hospice and Palliative Medicine has information on advance directives at www.aahpm.org and www.PalliativeDoctors.org

Ronald J. Crossno, MD CMD FAAFP FAAHPM

President, American Academy of Hospice and Palliative Medicine

What Is Palliative Care?

by Ruth Mugalian, Public Communications Inc.

Read the full article about defining palliative care in the Winter issue of The Quarterly.

When I talk about my work with hospice and palliative medicine specialists and why I enjoy it, I usually say something like this: “They’re doctors who take care of very sick patients. They relieve their symptoms and make them feel better.” It should be a communications professional’s dream. It’s simple, understandable and positive. There’s no esoteric medical jargon or complex technical language to translate into layman’s terms.

And yet, that simple, positive description doesn’t quite capture it.

Describing what hospice and palliative medicine specialists do is an evolving challenge, as evidenced by the many different ways the doctors explain their work. Unlike many other medical specialties, there’s no simple one- or two-word description, like “heart surgeon” or “cancer specialist.” “They relieve symptoms” is far too narrow, but also too broad. Don’t most doctors relieve symptoms? And, what about all the other care they provide: the help with decision making and navigating the system, the coordination of care, the support for families?

Just summarizing the breadth of care is challenging enough, but of course, there’s another challenge. The heart surgeon fixes the heart. The cancer specialist attacks the cancer. HPM doctors don’t cure. They provide the care that helps the surgeon and the oncologist cure, and that helps the patient endure the cure.

And sometimes there is no cure. That’s when the HPM’s role takes on special meaning and ironically and frustratingly gets twisted into something negative: they withhold care, give up on the patient, hasten death. Of course, the opposite is true. They stay on the job when others have no more to offer. They continue, or begin, providing care when others have stopped. They’re passionate about controlling pain. Snappy phrases are tempting: “They don’t cure, they care.” “They never stop caring,” “Helping you endure, with or without a cure.” They’re simple, understandable and positive, and they don’t quite capture it.

PalliMed reception

The PalliMed/ GeriPal co-sponsored reception last night was a success. As repeatedly and succinctly put by social networking guru Christian Sinclair, the purpose of this event was to meet those with whom we’ve been communicating for the past 12 months, whether by Twitter, List-serve, blog or Facebook. Plus it’s fun! Present were PalliMed contributors and its principals Drew Rosielle and Christian Sinclair. GeriPal’s Alex Smith mingled with the crowd of more than 50 (I arrived late so may have been more earlier) with drinks and hors d’oeuvres that were gone by 9:30 pm. Others from the Social Media presentation were in attendance.

Putting real (vs virtual) faces with names is a luxury in this era of social media, where opinions are rife but the exchange usually one-sided (instead of truly listening one is busy crafting a response) so hope we can use these associations to further our personal and professional life skills.

Thanks for the break.

One Voice, One Message

Hospice and Palliative Care Coalition Leaders Commit to Collaboration; Aim to Speak with “One Voice”

The organizational members of the Hospice & Palliative Care Coalition met in Washington DC in December 2010 to discuss recent, current and future opportunities for collaboration including ways to develop consistent and supportive messages on behalf of the entire field of hospice and palliative care whenever possible.

The Coalition was founded in 2001 when the American Academy of Hospice and Palliative Medicine (AAHPM), the Hospice and Palliative Nurses Association (HPNA) and the National Hospice and Palliative Care Organization (NHPCO) began meeting regularly by conference call. Since then, three others organizations have joined the coalition: The Center to Advance Palliative Care (CAPC), National Palliative Care Research Center (NPCRC) and National Association of Social Work (NASW). Over the years, the Coalition has met monthly to discuss regulatory and legislative issues, identify emerging trends and issues that cut across the field, and share information regarding the activities within each organization. In-person meetings are also held at least once a year.

During the most recent meeting, the Coalition reaffirmed its purpose and mission which is focused on providing national leadership to assure the availability of services and support for a broad range patients and families facing life-limiting illness.
Considerable discussion also centered around sensitivities surrounding language and consistent inclusion of key concepts and care settings when addressing on important issues, particularly those of interest to the general public and policymakers. The group agreed to use the inclusive phrase “hospice and palliative care” when describing the work of the coalition, and when taking action on behalf of the coalition on related activities and goals.

Participants in the recent meeting included: Ron Crossno, Sean Morrison and Steve Smith from AAHPM; Carol Sieger, Amber Jones and Diane Meier from CAPC; Susan Cox, Todd Hultman and Judy Lentz from HPNA; Betsy Clark, Stacy Collins and Chris Herman from NASW; Gretchen Brown, Judi Lund Person and Don Schumacher from NHPCO. Sean Morrison also represented NPCRC. Additional public policy staff and consultants joined the meeting in the afternoon to discuss collaborative efforts related to advocacy.

Those assembled also clarified the coalition would accomplish its mission by:

  • Identifying and supporting a common agenda relating to public policy, education and research; and;
  • Sustaining and enhancing access to high quality services that honor patient and family health care decisions
  • Creating opportunities for collaboration and communication among members, staff and volunteer leaders whenever possible and appropriate

Leaders from the coalition agreed the meeting was very productive and remain committed to continuing to work together to improve quality of life for patients and families living with serious and/or life-limiting illness in all settings.

Palliative Care Grand Rounds 2.9

Welcome to the monthly edition of Palliative Care Grand Rounds the monthly review of the best of hospice and palliative care content from blogs. We started in February of 2009 and are almost done with our second full year. To see previous editions of Palliative Care Grand Rounds go the http://palliativecaregr.blogspot.com/.

Marten Creek Photo by Joan Robinson RN CHPN Seattle WA

This summer has been a exciting month for palliative care and hospice advocates. At the beginning of the month we were still taking in all the attention form Atul Gawande’s article in the New Yorker titled ‘Letting Go.‘ And then in the middle of August we had the ground breaking research published in the NEJM demonstrating early palliative care improves QOL, reduces depression and potentially can improve survival.

So I thought we could start with blog posts relating to those two big tent poles.

The Gawande Article

People were reflecting on the writing of Atul Gawande and I think there is a lot to learn from how he tells his stories. It may help in how you give a presentation or write articles or blog posts of your own. My favorite was a blog called ‘Not Exactly Rocket Science’, where blogger Ed Yong writes on ‘Deconstructing Gawande – why structure and narrative are important.’ Also check out Bob Wachter’s blog piece on Atul Gawande and the Art of Medical Writing. He writes:

In this month’s piece, Gawande continues to tackle the most important healthcare issues of our day. By doing this with such clarity and beauty, he makes us all a little smarter, wiser, and more sensitive. His writing is a gift.

Debra Bradley Ruder from the GrowthHouse blogs Goodbyes writes on the Gawande article as well.

The NEJM Study

Both Geripal (Alex Smith) and Pallimed (Lyle Fettig) jumped on the NEJM research quickly and provided really helpful insights into the research that you wouldn’t get just reading the New York Times or other media sources. Between these two posts there are currently over 35 comments! Several days later Drew Rosielle let the results marinate with him a bit and the result is a tasty dessert highlighting the implications for our field in his Pallimed post ‘You had me at improves HRQOL.’

Diane Meier jumped into blogging and wrote a good piece at the John Hartford Foundation blog, that was picked up my the (general medicine) Grand Rounds and got 2nd billing. Many other key blogs covered this as well including:

Other great bits

Each person faces cancer in his or her own way. There is nothing right or wrong about the different approaches people take. Denial or acceptance is not a statement about someone’s character. Having hope or not does not always come from an explicit decision to be hopeful; it often just happens one way or the other. Likewise, the spectrum from stoicism and strength to dependence and, yes, even weakness, are reactions that are unpredictable until you are actually faced with the disease. Too, how one feels can change over time — whether minute to minute, day to day, or year to year. So, one thing I have learned is not to be judgmental about how a person responds to cancer.

It is doubtful that a focus on reducing EOL spending per se will result in as much savings as is often assumed, for one simple reason: The concept of the last year of life is inherently retrospective. You do not know when the last year of someone’s life started until it ends. The stylized fact that leads to the assumption of wasteful EOL spending., i.e., 1 in 4 dollars spent on care in the last year of life, is based on an inherently retrospective concept that does not translate easily into the prospective decision-making that would be needed to reduce wasteful, futile or harmful spending in the last year of life.

And then I understood. I wasn’t crying for him. I was crying for me.

I cried because I couldn’t imagine a memorial service for me looking anything like the one for Rob. I cried because I couldn’t imagine that twenty people, let alone two hundred, would give up an evening to say nice things about me. I cried because I couldn’t imagine that my life, already a lot longer than Rob’s, would ever have that kind of meaning and impact. I understood then that my patient’s short life was telling me to live the rest of my own life better — to be warmer, and more open-hearted, and more loving.

people—actually mainly men—wished that they hadn’t worked so hard. They “deeply regretted spending so much of their lives on the treadmill of a work existence.” My wife would say that I work all the time, but I live a life where work and play are not easily distinguished. Is writing this work? It doesn’t feel like it to me. Tomorrow I’m off to give a talk at a science festival in the Austrian Alps. Is that work? The truth is that even in the most serious jobs I’ve always let the appealing (and often frivolous) come before the serious.

Some humor

Oscar the Cat - Photo by Stew Milne of AP.

So as you can see there are many people talking about the difficult things people don’t want to talk about. We are not alone in wanting to provide good quality care for patients and families facing with life-threatening illness. Sometimes with a little humor is a tough time, sometimes with fantastic insights into what it means to be alive. Go read and support the things that impact you with a comment, Facebook ‘like’ or email to a colleague.

Check out next month’s host the SWHPN blog called palliative-sw. They have a new look!

PCGR has subscription options; you can follow by email or RSS feed. An aggregated feed of credible, rotating health and medicine blog carnivals is also available.

NEJM Study Shows Palliative Care Extends Life

Most of you have already seen the study released yesterday in the New England Journal of Medicine and I suspect that those of you who work in palliative medicine were not at all surprised by the results: patients who received palliative care along with standard oncology treatment for advanced lung cancer not only had a higher quality of life, but lived three months longer, as well. Isn’t that what we’ve been saying all along?

I have personal experience that supports their conclusions. When I was diagnosed with advanced ovarian cancer in 2008, I relied on a program of palliative care to enable me to tolerate the toxic intraperitoneal chemotherapy that was recommended. I was determined to get ALL of my treatments, WHEN they were scheduled, in order to give myself the best chance of responding. I sought out aggressive symptom management, controlling the pain and nausea so that I could be ready for the next round of treatment. I saw an oncology counselor and set up a website to coordinate meals for my family and me. I prayed. My friends prayed. Friends of friends prayed. I used acupuncture, initially to help with the nausea but later, just because it made me feel better. Three Reiki masters came to my home weekly to keep my energy positive.

And I stayed on schedule! I had chemotherapy the day before Thanksgiving (only because they were closed on Thanksgiving and Thursday was my “usual” day). I finished my last treatment on Christmas Eve. I was determined to do this and palliative care made it possible. With an “n” of one, I’m not a randomized trial, but I did better than those around me. And, I’m still here two years later to marvel at my survival.

But now there IS a randomized trial!

151 patients with newly diagnosed, metastatic non-small-cell lung cancer were randomly assigned to receive either early palliative care integrated with standard oncology care or standard oncology care alone. The primary outcome was the change in quality of life at 12 weeks, assessed by the Functional Assessment of Cancer Therapy-Lung (FACT-L) and the Hospital Anxiety and Depression Scale. Data on end-of-life care were collected from electronic medical records.

Patients who received concurrent palliative care had a better quality of life than did patients who received standard care alone (P = 0.03). They also had fewer depressive symptoms (P = 0.01). At the end-of-life, the palliative care group had fewer aggressive treatments (aggressive care was defined as receiving any of the following: chemotherapy within 14 days of death, no hospice care, or admission to hospice less than 3 days before death) (P = 0.05). Despite this, the patients who received concurrent palliative care from the time of diagnosis lived longer – almost 3 months longer (ll.6 months vs. 8.9 months, P = 0.02).

This study confirms the importance of palliative care begun at the time a serious illness is diagnosed, enabling patients to live better AND to live longer. Great news for patients and for the field of palliative care.