Sharing Stories: Cancer and End-of-Life Care

In HFA's upcoming teleconference, you'll meet a variety of people dealing with cancer and end-of-life care. Below are excerpts from three individuals - two professionals who encounter cancer on a daily basis, and a daughter who describes her family's experience following her mother's cancer diagnosis. Their lives and stories are extraordinary and give you an idea of the depth of this year's March 24 program.

Shelda Smith is a medical social worker with Calvary Hospital and Hospice in Bronx, NY. She talks about the emotional components of her work.

Being hospice clinicians, [we] carry the grief of a lot of whole families on our shoulders. And one of the most difficult things is balancing that emotional piece of working with those families with your own personal life and your own sense of well-being. The toughest cases for me have been the cases where I've met women who are about my age and have children about the age of my children. And it certainly mirrors my own mortality. I feel vulnerable and that's difficult. It's often very difficult to... think you're invincible with this job. We enter into somebody's emotional world and we come out of it feeling a lot of those emotions. I try to put myself in a place where I do feel it, and I could empathize with it, and I don't run away from it. I think it's important even for patients to know that you're there, that you are where they are and they can sense it. And for me, I think it's probably my best skill -- being able to be where patients are, and really letting them know that I understand what they're going through. But then you have to find a way to come out of that house and be able to leave that behind.

Jennifer Alkhayat is a nurse practitioner with Capital Palliative Care Consultants, which is based in Northern Virginia and affiliated with Capital Hospice.

Capital Hospice had a great medical team and realized that there was a huge part of the population that was not being able to benefit from the hospice services, but could still benefit from the knowledge and education that all of our medical professionals had. So we thought it would be a good idea to get out and into the community, and be able to offer these services to those who were not quite ready for hospice yet. The types of patients that we see are generally patients with life-limiting illness, who have symptoms that may be out of control while they are pursuing other types of aggressive treatments, whether that be chemotherapy, dialysis, any of those things. When you have a disease like this, they usually go hand in hand with symptoms -- you're usually not well-managed at that point, because a lot of times people think that this is part of the illness, and they need to go through that part. What we try to do is educate them, let them know that they don't have to suffer, that they can continue to get the treatment that they want to pursue, but at the same time have the quality of life that they would like to live. The type of symptoms that Capital Palliative Care assists in managing are pain, shortness of breath, fatigue, anxiety, constipation, diarrhea, any -- any adverse effects that you may be getting from aggressive treatment or from the disease itself.

The special role that we have is, especially when Capital Palliative Care gets involved early in someone's cancer diagnosis, is being able to take that journey with them, to make sure that they are comfortable, to make sure that they have the energy, to make sure that they have the support to continue with these treatments that can be quite burdensome to many people. Many people really hold on to these treatments as kind of their lifeline, and don't want to let go.

Sherry Meyers of Great Falls, VA, is one of three siblings and talks about her mother's cancer diagnosis and her family's experience with hospice care.

We learned about mom having lung cancer five years ago, so that would be 2005. It was St. Patrick's Day. It was very unexpected, although she was a smoker for a number of years. We weren't shocked that she had lung cancer, but were surprised that it had taken so long to catch up to her. So we were advised by her general practitioner to see a series of oncologists and to bring in hospice right away because she was 83 at the time. So we had no idea how long she would live or how far it had progressed. I am the youngest of three children, but I am kind of the main caregiver of my family, and so I was the one that had to contact the hospice and brought them in soon after she was diagnosed.

[Mom] was very apprehensive about it at the beginning because she thought if I have hospice, then I'm going to die tomorrow, which was what a lot of my brother was focusing on. She eventually came to accept it and she lived for a year and a half with the lung cancer, so we were involved with hospice for a year and a half. [Hospice] was absolutely incredible. We had a very good experience with them. When they first came with us, the hospice nurse and social worker took us through all that they would be doing. My sister was very for it. My brother, as I said, was a little apprehensive in the beginning, just because he thought it was too soon to bring hospice in. He realized shortly thereafter that it was a great decision because they brought a calming influence to a very difficult situation.

Bereavement Camps for Kids Webinar on February 1st

Today is the last day to register for HFA's Bereavement Camps for Kids: Benefits and Challenges Live Webinar (Monday, February 1, 1:00pm-2:30pm ET.) This webinar is part of our Grieving Children and Adolescents series. If you can't make Monday's live webinar, you can still register for the series and view the first webinar on-demand once it is archived.

HFA's live online webinar series includes:

Bereavement Camps for Kids: Benefits and Challenges on Monday, February 1. Panelists will include: Sherry Schachter, Director of Calvary Hospital's annual bereavement camp in New York; Angela Hamblen, Director of Camp Good Grief in Tennessee; Bonnie Carroll, Executive Director of TAPS, which offers support to those suffering the loss of a military loved one; and Lesa Linster, National Camp Erin Project Director at The Moyer Foundation.

Bereaved Children and Adolescents: Lessons from Research on Wednesday, April 14. Panelists will include J. William Worden, Lead Researcher for the Harvard Child Bereavement Study and Irwin N. Sandler, Regent's Professor of Psychology, Arizona State University.

Grieving Children and Adolescents: The Role of Internet Support on Tuesday, June 15. Panelists will include Pamela Gabbay of the Mourning Star Center and National Alliance of Grieving Children and Cendra Lynn, founder of GriefNet and KidsAid.com.

Register for the series here. The Organization Registration Fee for the three-part series is $250, which allows access to both the live webcast and an archived online program for one year past the live webinar, with unlimited complimentary CEs (1.5 hours) available for a wide range of professions. If purchased separately, the Organization Fee is $100 per program. Individuals may register for each webinar for $35 and 1.5 hours of CE credit is included for the registered individual. To learn more, contact HFA at 800-854-3402 or see the website.

Los Angeles Times Focuses on End-of-Life Care

The Los Angeles Times is featuring a few articles on hospice and end-of-life care. First, Lisa Zamosky wrote about the choices patients face at the end of life, referencing several recent studies that looked at the cost and quality of various end-of-life care options.

"People may think that the more money spent on their healthcare, the better care and quality of life purchased. At the end of life, it doesn't work that way," says Holly G. Prigerson, director of the Center for Psycho-oncology and Palliative Care Research at the Dana-Farber Cancer Institute at Harvard Medical School. She was one of the authors on an end-of-life care study published last year in the Archives of Internal Medicine. "In fact, we found the opposite to be true. We found that most of the costs of end-of-life care pay for burdensome, non-curative care that offers no substantial survival advantage."

That study showed that cancer patients who planned in advance with their doctors about end-of-life treatment had much lower healthcare costs in their final week of life than those who didn't. What's more, the higher the cost of medical care, they found, the worse the patient's quality of life was in the final week of life.

Christie Aschwanden offers a basic review of hospice, including who is eligible and what to expect. (For more information on hospice, see HFA's What is Hospice? section.)

When and how to have the discussion: Family members and terminally ill patients often struggle to initiate discussions about death, and this can result in a conspiracy of silence that can delay hospice care, Whitney says. "Very often the patient says to me, 'I know I'm dying, but please don't tell my wife.' And then I'll talk to the wife and she'll say, 'I know my husband is dying, but please don't tell him.' "

Because doctors too may be reluctant to suggest hospice, it's often up to the patient or family to ask. If needed, hospice staff can call the doctor to help initiate the discussion.

Today, Jill U. Adams discusses a study from the journal Cancer that we posted earlier this month.

Here's a closer look at why end-of-life discussions are important.

If done sensitively and as part of ongoing medical care, discussing whether to resuscitate, when to seek hospice care and where patients want to spend the last days of their lives can actually empower patients, rather than making patients lose hope, say Keating and other palliative care experts. Instead, the talks help patients gain some control over treatment and over the final stage of their lives.

"My own view about this is that the whole approach to dying is really an approach to living," says Dr. Katherine Kahn, a UCLA physician and co-author of the new study. "The more we can make these discussions about end of life part of a larger set of discussions with patients about how they approach medical care and how they approach life, the better we can honor their medical wishes when it comes time."

To do this, patients and doctors need to accept the facts, says Dr. Michael Levy, an oncologist at Fox Chase Cancer Center in Philadelphia. He chaired the panel that crafted the cancer network guidelines.

Only 15% of patients with Stage 4 cancer have a viable chance at a cure, he says, and even in those patients, only 50% are cured. "That means that 92.5% of patients with advanced disease will die of their cancer," Levy says. "So you've got to just talk about it."

In the column, In Practice, Mark Morocco, an associate professor and associate residency director of emergency medicine at UCLA Medical Center, writes about his difficulty discussing end-of-life care with a particular patient when he was a medical student.

I was the "sub-intern" -- a few months from graduation -- so when Mr. Martinez exasperated the last of the "real" doctors, they passed the hot potato, and the responsibility for his end-of-life care, to me. With the latest academic ideas on hospice care still fresh in my mind, I knew exactly what to do. I would control his pain aggressively and arrange for care in some place where he could "die with dignity." If only I could get him on board with this plan, my job would be easy.

Obvious Lesson No. 1 in medical school, however, is that there is nothing easy about "treating" death and nothing simple about making plans for it. Armed with miracle machines and genetically built drugs, doctors promptly forget this lesson in our focus to save our patients or to at least let them live another day. Yet death waits for all of us, and, like Mr. Martinez, we usually just don't want to talk about it. "What's to talk about?" he'd yell at me. "Go away!"

Awards and Tributes Spotlight Hospice and Palliative Providers

• Hastings Center Cunniff-Dixon Physician Award Recipients
  
  Robert A. Milch, MD, FACS, a surgeon who helped found Hospice Buffalo, won the established physician award for leadership in end-of-life care. Three other physicians will receive early career awards, Elisabeth Potts Dellon, MD, MPH, of the University of North Carolina; Jeffrey N. Stoneberg, DO, of San Diego Hospice and The Institute for Palliative Medicine; and Eytan Szmuilowicz, MD, of Northwestern Medical Center in Chicago.
  
  Jeffrey N. Stoneberg, DO, mentioned above, was featured on San Diego University's KPBS station.
  
  
• 2010 End-of-Life Nursing Education Consortium (ELNEC) Award from the American Association of Colleges of Nursing (AACN)
  
  Madeline Lambrecht, professor in the School of Nursing at the University of Delaware received this award.
  
  

• The Hospice and Palliative Nurses Association is honoring nurses with a Memorial Photo Tribute. Learn more.

  To help celebrate the 2010 International Year of the Nurse (2010 IYNurse), HPNA has a very unique opportunity for its members to commemorate the invaluable contributions of their nursing colleagues who have died. The National Office will collect their names and photos to launch the HPNA Photo Memorial Tribute to Nursing Colleagues.
  
  We invite you to send a photo and brief description of the colleague you wish to memorialize. This special person can be a nursing mentor, past nursing co-worker, national nursing leader, or a nurse in your life who has passed away.

High School Students Learn Hospice 101

An elective course at Moorestown Friends School in New Jersey teaches high school students about end-of-life care and hospice.

Since the class began in the fall, the students have composed sympathy notes, baked for a grieving family, read poetry to seniors at a local nursing home, and a lot more.

You could call it Empathy 101, but at Moorestown Friends, they just call it Samaritan Hospice and Health Care. Started in 2004, the unusual elective teaches ninth through 12th graders about end-of-life care and dealing with death, grief, and loss.

Those can be tough topics even for older people, but the Moorestown Friends students don't shy away.

"The thing that most surprises me is that kids sign up for it," said Sally Cezo, volunteer services manager for Marlton-based Samaritan, who teaches the course with Priscilla Taylor-Williams, chairwoman of religious studies for the school. "We're talking end of life, and the fact that they're interested in these things at this young age is pretty amazing."

Over time, the students become more comfortable with grieving as part of the cycle of life.

"They become less afraid of giving support," Taylor-Williams said.

For some students, the class is a way to work off some of the 50 hours of community service required for graduation. However, quite a few are interested in health careers and consider the class good preparation. Some have experienced grief.

The course description:

This course is designed to meet three areas of concern. The first is to help Samaritan Hospice and other health care providers to promote awareness of the needs of families, patients and caregivers facing difficult health care or end of life decisions. This service includes an interdisciplinary program that takes into account the physical, emotional and spiritual aspects of the ill and the dying. It also includes support for family members and community members in managing the hospitalization or grieving process. The second category of concern is for students to understand the natural processes of the end of life transition, including mourning and grieving. In addition students will understand the societal context of providing services to help families manage the grave health care concerns and end of life experience; and the tensions within society around provision of these services. There will be several speakers from a variety of local health care and hospice service providers. This is a service learning course, this means that not only will you have the opportunity to provide service but you will also spend some time reflecting on the meaning of that service for society and how it impacts you personally. You will receive 12 hours of service and a letter grade.

Studies Differ on Patient Advance Care Planning Wishes

A study finds patients with chronic kidney disease feel their advance care planning needs are not being met. From MedPage Today:

Nearly half of patients with advanced chronic disease said they would like to make advance care plans with their nephrologist, but only 10% had actually discussed it, Sara N. Davison, MD, of the University of Alberta in Edmonton, found.

They had done no better with their family doctors, Davison wrote online in the Clinical Journal of the American Society of Nephrology, reporting the results of her survey of 584 patients. Only 8% of patients reported talking about end-of-life issues with family physicians, but 39% indicated that they wanted such discussions.

Most patients also said they didn't know much about the palliative care options or how their final weeks of life would progress. Yet they expressed strong desires for more information and involvement in decision-making.

"Communication of prognosis and discussions related to planning for future death are lacking in the routine care of chronic kidney disease patients," Davison wrote.

While this study points to patients wanting more discussion to take place with their doctors, a study in the Journal of Clinical Oncology examining attitudes among cancer patients indicates more reticence about discussing advance care planning with their oncologists. From Pallimed:

. . .The data come from a prospective study involving all patients consecutively admitted to an academic hospital's inpatient oncology service over several months; patients (N=75, mean age 51 years, 23% African American; the majority had hematologic malignancies) were interviewed about AD [Advance Directive] completion and preferences.

41% of patients reported having completed an AD (all were given a description of what was meant by an AD); in multivariate analysis older age was the only predictor of AD completion. 75% of the patients had discussed an AD with someone - mostly family (23 patients reported a discussion with a physician). Only 5 patients reported a discussion about ADs with their oncologist. When they asked patients if they would like to discuss ADs with their oncologist, only 23% said they would (this is similar to the finding in the study 10 years ago). When, however, they asked patients which, of all their doctors, they would prefer to discuss ADs, a plurality said their oncologist (48%). That is, if they have to do it, they'd prefer their oncologist. Notably the vast majority of patients (87%) thought that physicians admitting a patient to the hospital should ask about ADs (they indicated this was not only ok but an important thing to do). Thus, the title of their article, and this post - 'Paradoxes in ACP....'

(They also asked patients about knowledge of hospice care and palliative care. 21% of patients reported knowledge of 'palliative care' vs. 81% for 'hospice care,' and hardly anyone said they knew anyone who had received palliative care.)

Basically these patients, most of whom did not have an AD, weren't particularly interested in talking about them with doctors (oncologist included), while recognizing that when you are admitted/acutely ill it's good to bring it up with a stranger...but that if they had to discuss them with a doctor most preferred their oncologist. This is summarized by the authors as: "while most patients would not like to discuss ADs with their oncologist, they would prefer to discuss them with their oncologist."

HFA Announces Webinar Series on Helping Children and Adolescents Cope with Grief and Loss

Hospice Foundation of America will present a series of webinars on helping children and adolescents cope with grief and loss. Hosted by nationally-known expert Kenneth Doka, Senior Bereavement Consultant to Hospice Foundation of America (HFA), the series will look at lessons learned from extensive research into the issue, emerging trends on the horizon, and how hospices and other health and community organizations can use bereavement camps and other strategies to help grieving children. The webinars will feature some of the best-known names in the field, as well as professionals who work with grieving children and adolescents every day.
HFA's live online webinar series includes:

• Bereavement Camps for Kids: Benefits and Challenges on Monday, February 1. Panelists will include: Sherry Schachter, Director of Calvary Hospital's annual bereavement camp in New York; Angela Hamblen, Director of Camp Good Grief in Tennessee; Bonnie Carroll, Executive Director of TAPS, which offers support to those suffering the loss of a military loved one; and Lesa Linster, National Camp Erin Project Director at The Moyer Foundation.
• Bereaved Children and Adolescents: Lessons from Research on Wednesday, April 14. Panelists will include J. William Worden, Lead Researcher for the Harvard Child Bereavement Study and Irwin N. Sandler, Regent's Professor of Psychology, Arizona State University
• Grieving Children and Adolescents: The Role of Internet Support on Tuesday, June 15. Panelists will include Pamela Gabbay of the Mourning Star Center and National Alliance of Grieving Children and Cendra Lynn, founder of GriefNet and KidsAid.com.

(note: The live webinars will take place from 1pm — 2:30pm ET.)
Almost 875,000 children and adolescents have experienced the death of a parent, and over 1.8 million children are dealing with the loss of a sibling. These webinars will discuss research and interventions to help young people dealing with these losses, as well as the myriad of other losses they may experience. "If you already offer programs for bereaved children, these webinars will reaffirm and review the most current information and best practices," states Dr. Doka. "If your organization is considering starting a camp or looking into other ways to expand children's services, this programming will be a great place to explore this new and viable approach to serving the bereaved youth of your community." The webinars and supporting materials will offer a toolbox of practical information.
HFA is grateful to the support of The Moyer Foundation for its sponsorship of this series. The Moyer Foundation offers encouragement, comfort and support to children in distress; the Foundation created and funds Camp Erin, the largest network of bereavement camps in the country for children and teens who are grieving a significant loss.
Register here. The Organization Registration Fee for the three-part series is $250, which allows access to both the live webcast and an archived online program for one year past the live webinar, with unlimited complimentary CEs (1.5 hours) available for a wide range of professions. If purchased separately, the Organization Fee is $100 per program. Individuals may register for each webinar for $35 and 1.5 hours of CE credit is included for the registered individual. To learn more about this exciting educational offering, contact HFA at 800-854-3402 or http://www.hospicefoundation.org/webinars

Survey Shows Doctors Delay End-of-Life Conversations

A study published online in the journal Cancer yesterday reveals that less than half of physicians would discuss end-of-life topics like resuscitation, hospice care, or where a patient wished to die, if the patient was still feeling well. Over 4,000 physicians completed the survey, and about 60% were non-cancer specialists. From MedPage Today :

Doctors may also have reservations about their estimates of patients' remaining life span, the researchers wrote, making them reluctant to suggest immediately that patients think about hospice care or where they would like to spend their final days.

But such reluctance can have adverse consequences for patients and their families, Keating and colleagues argued.

"Waiting until all possible treatments are exhausted may delay discussions until it is too late for patients' preferences and values to be addressed," they wrote.

The study was part of a large, multistate project called the Cancer Care Outcomes Research and Surveillance Consortium, which involves more than 10,000 patients diagnosed from 2003 to 2005 with lung or colorectal cancer.

The New York Times’ Second Opinion column:

The results came as a surprise: the doctors were even more reluctant to ask certain questions than the researchers had expected. Although 65 percent said they would talk about the prognosis “now,” far fewer would discuss the other issues at the same time: resuscitation, 44 percent; hospice, 26 percent; site of death, 21 percent. Instead, most of the doctors said they would rather wait until the patients felt worse or there were no more cancer treatments to offer.

They were not asked for their reasoning, but Dr. Keating offered several possibilities. One is that doctors may disagree with the guidelines, which are based on expert opinion rather than data.

“Or they may not be comfortable discussing it,” she said. “These conversations are time-consuming and difficult. Some doctors may feel patients will lose hope. It’s easier to say, ‘Let’s try another round of chemotherapy,’ instead of having a heart-to-heart discussion.” Training may also be a factor, Dr. Keating said. Medical schools spend more time on end-of-life issues than they did in the past, and the greater willingness of younger doctors to broach the subject may reflect that change.

After the Death in Pictures

The Washington Post published a photo gallery yesterday called "Remnants of a Life" about 104-year-old Classie Morant. The poignant images, by photojournalist Carol Guzy, are accompanied by a narrative of Morant's life and death, including the details family and friends must handle after the death. A hospice chaplain, Rev. Robbie Wellington, speaks at her funeral service.

An accompanying article appeared earlier in the week. Guzy writes:

Death is not like in the movies. It isn't pretty and doesn't always come fast or easy, but rather like a slow withering. My role as a photojournalist was to document. Classie had respected that role and trusted me to follow her journey to life's greatest mystery. At a certain point, though most of the family wanted to honor Classie's wishes, two relatives requested new parameters: I could visit and write the story but no pictures. It wasn't too personal for Classie, it was too personal for them; and I had to respect that. For a visual storyteller, it was a difficult turn of events. I thought not even the greatest poet could find words to match the images of Classie that were never made.

January 2010 Palliative Care Grand Rounds

The first edition of Palliative Care Grand Rounds for 2010, a "monthly blog carnival" highlighting blog posts related to hospice and palliative care, is up at the Pallimed blog.

Connecticut Joins States Offering Hospice Coverage under Medicaid

A new Connecticut state law went into effect January 1, 2010 adds hospice services as a Medicaid benefit.

Previously, patients with most types of private insurance and Medicare, which covers the elderly, were eligible to have hospice services covered, said Ronny J. Knight, senior vice president of planning and reimbursement for Connecticut Hospice. But in Connecticut and just one other state, Medicaid patients were ineligible for the end-of-life medical and support services. These include the care of hospice nurses, social workers, aides, clergy, volunteers and bereavement counselors to terminally ill patients and their families. Hospice care can be provided in a patient's home or in a skilled nursing facility.

In August 2009, New Hampshire began offering hospice care under the Medicaid benefit to its residents. Budget shortfalls threatened to end the benefit in South Carolina earlier last year, but funding was restored.