Engage with Grace Blog Rally

For three years now, many of us bloggers participated in a “blog rally” to promote Engage With Grace – a movement aimed at having all of us understand and communicate our end-of-life wishes.

It was a great success, with over 100 bloggers in the healthcare space and beyond participating and spreading the word. Plus, it was timed to coincide with a weekend when most of us are with the very people with whom we should be having these tough conversations – our closest friends and family.

Our original mission – to get more and more people talking about their end of life wishes – hasn’t changed. But it’s been quite a year – so we thought this holiday, we’d try something different.
A bit of levity.
At the heart of Engage With Grace are five questions designed to get the conversation started. We’ve included them at the end of this post. They’re not easy questions, but they are important.

To help ease us into these tough questions, and in the spirit of the season, we thought we’d start with five parallel questions that ARE pretty easy to answer:

Silly? Maybe. But it underscores how having a template like this – just five questions in plain, simple language – can deflate some of the complexity, formality and even misnomers that have sometimes surrounded the end-of-life discussion.

So with that, we’ve included the five questions from Engage With Grace below. Think about them, document them, share them.

Over the past year there’s been a lot of discussion around end of life. And we’ve been fortunate to hear a lot of the more uplifting stories, as folks have used these five questions to initiate the conversation.

One man shared how surprised he was to learn that his wife’s preferences were not what he expected. Befitting this holiday, The One Slide now stands sentry on their fridge.

Wishing you and yours a holiday that’s fulfilling in all the right ways.

To learn more please go to www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team.

Facing Death on PBS

PBS' Frontline program will examine how dying occurs in Mount Sinai's ICU. The program will air tomorrow night, November 23rd at 9pm. You can find your local station here. A link to the full episode is also included below this viewer.

Watch the full episode. See more FRONTLINE.

What Do Hospice Social Workers Do?

November is National Hospice and Palliative Care Month -- a perfect time to explain the role of the hospice social worker as a member of the hospice care team. President Obama’s recent Presidential Proclamation for National Hospice and Palliative Care Month encourages all of us, including social workers, to engage “in activities that promote awareness of the important role of hospice care.” Many people, even if they understand the hospice concept, aren’t aware that hospice care is provided through a team approach and that social workers are essential members of the team.

Hospice social workers are part of the core services covered under the Medicare Hospice Benefit. Social workers, working with other interdisciplinary team members, address the physical, psychological, social, emotional and spiritual effects of a person living with a terminal condition. Take note here, I said living, not dying, with a terminal illness. Hospice provides quality, dignified and compassionate care for a person and their loved ones during a person’s final days of living.

When a hospice social worker visits an individual and his or her loved ones in hospice care, she or he begins by completing a comprehensive assessment. The assessment helps the social worker understand the needs, strengths and goals of the patient and family, as they cope with the effects of progressive illness, dying and death. Social workers do this by building trust and a relationship with the patient and family, during a time of crisis and vulnerability. With this understanding and trust established, the social worker can best help the family manage this difficult experience.

Patients and families can be devastated in so many ways by the dying and death of a loved one. Hospice social workers help meet a family’s basic needs by educating and advocating for the patient and family. The hospice social work interventions may include counseling and support to deal with loss, grief and bereavement before the death; helping patients and families deal with stress and conflicts; providing palliative care techniques for distressing symptoms such as depression, pain and anxiety; addressing ethical dilemmas; and providing visits and collaboration with hospice team members. Hospice social workers pay close attention to practical yet important matters, such as identifying financial and other resources to meet basic needs such as rent, utilities or medical co-pays for medications; assisting patients and families navigate health systems and benefits; and end-of-life planning including advance directives.

Hospice social workers do not function in isolation, but rather, with other team members including the patient, family, physician, nurse, chaplain, home health aide and volunteers, to best meet the patient and family’s goals. Hospice social workers often have an advanced degree in social work or a bachelor’s degree from an accredited school of social work. But being a hospice social worker takes more than special training; hospice social workers bring compassion and sensitivity to people experiencing loss and grief and a willingness to be present when someone is dying.

Hospice social workers often step out of direct care to provide leadership and education, and shape research and policy in hospice and end-of-life care across the local, regional and national landscape. As hospice social workers, we celebrate National Hospice and Palliative Care Month and are proud to contribute to the ongoing mission of providing quality end-of-life care through hospice.

Karyn Walsh, LCSW

HFA Social Worker

Dartmouth Atlas Report on End-of-Life Cancer Care

Researchers at the Dartmouth Atlas Project released a new report today on care received by Medicare patients with advanced cancer at the end of life. Nearly one-third of those patients die in hospitals and ICUs, while half receive hospice care, according to the report. The report shows that end-of-life care varies significantly throughout the U.S., even among top academic medical centers. Bloomberg News interviewed lead author David Goodman saying:

“The biggest problem we have with end-of-life care for cancer patients is not overtreatment, it’s undertreatment when it comes to working for quality of life,” Goodman said in a telephone interview. “Patients want to live long, but they also want to live well.”

Goodman is co-principal investigator for Dartmouth Atlas in Lebanon, New Hampshire. That project, which was cited by President Barack Obama during the health-care debate, has issued reports for more than 20 years showing disparities in how medical resources are distributed and used.

“The hardest part of my job, bar none, is telling patients -- most of whom I have been working with for months, even years -- that I have nothing else to offer them,” Sledge, an oncologist who is co-director of the breast cancer program at Indiana University in Indianapolis, said in a telephone interview.

CBS News discussed patient's end-of-life care choices in this report:

National Family Caregivers Month

November is National Family Caregivers Month and the 2010 theme is "Reach Out for Help." More than 66 million people provide care for a loved one each day in the U.S.

HFA's Hospice Information Center offers this free 20-minute program, Family Caregiving: Coping with the Challenges, that offers support and ideas for dealing with this difficult job. Additional resources are also available, including a fact sheet and print slides.

Honoring Hospice Nurses

HFA Operations Consultant Jennifer Carlson, RN, CHPN, wrote about the role of hospice nurses for the Hospice and Caregiving Blog last December - in honor of all the wonderful nurses who work in the hospice and palliative care field we post it again for National Nurses Week (May 6-12).

What Do Hospice Nurses Do?

A hospice nurse cares for all types of patients; young, old, pleasant, belligerent, educated, and uninformed. The Registered Nurse (RN), often called the Case Manager, provides oversight to the patient’s care while working collaboratively with all members of the hospice team. Hospice nurses see an opportunity to help people meet their end-of-life goals, by providing compassionate, highly-skilled care. Hospice nurses have extensive knowledge in symptom management, a team approach to end-of-life care, federal and state regulations, and hands-on patient care.

A hospice RN always works collaboratively with all members of the hospice team. The hospice RN is trained to assess the patient’s overall condition through dialogue, a physical exam, and reviewing past treatments and medication. The RN is usually the first person who visits a potential hospice patient, and continues to visit the home as often as necessary to assess the patient’s status and address issues as they develop.

Discussion regarding past medical history, including previous attempts to manage symptoms, is a significant part of the interaction between the nurse and the patient. Part of a hospice nurse’s role is not only to ensure that a patient’s symptoms are controlled, but that the patient feels in control. The hospice nurse develops a trusting relationship, so the patient and family knows that the hospice nurse will be present and effective throughout the experience.

Utilizing extensive knowledge and skills, the nurse teaches patients and caregivers how to administer correct doses of the medications ordered by the physician and what to watch for in terms of effectiveness or adverse reactions. The RN reports those findings to the physician, obtains orders for all care and treatments, and evaluates the effectiveness of the medications and treatments.

The RN also educates the patient/family about what to expect as the disease progresses. Often just knowing what might happen can ease the mind of a tired caregiver or an anxious patient. The RN provides pertinent information, such as nutritional requirements at the end of life, care of the bedbound person, wound care if necessary, and ways to ease suffering. This information includes both the use of medications as well as other suggestions as simple as the power of a soothing touch or peaceful atmosphere, ways that can be as equally effective in managing pain and bringing relief.

If the patient is not in hospice at home, the hospice RN collaborates with facility staff in Nursing Homes, Assisted Living Communities and hospitals. In addition to supporting the family, the hospice nurse can provide guidance and emotional support to staff.

All core members of the interdisciplinary team, including the RN, gather at least every 15 days to discuss areas of concern or achievements in managing the patient and family’s physical, emotional and spiritual issues. These meetings support not only the family and patient goals, but provide an essential time for the staff to support each other in this difficult work.

An RN is not the only type of nurse that can be found on a hospice team. A Licensed Professional Nurse (LPN) may also provide care, under the direct supervision of an RN. Additional personal care may be provided by a Certified Nurse Assistant (CNA), who also operates under the supervision of the hospice nurse. Hospice nurses, RNs and LPNs, can become certified in hospice and palliative care, a specialty achieved through hard work and dedication.

Hospice nurses are compassionate, skilled, and comfortable being surrounded by the dying. Their idea of a successful day is to have a much loved patient die peacefully, symptom free and surrounded by caregivers that feel a sense of accomplishment in providing the best care they could. A hospice nurse’s mission comes with many tangible and intangible rewards that make it all worthwhile.

Jennifer Carlson, RN, CHPN
HFA Operations Consultant

Honoring our Veterans

Of all Americans who die each year, about 25% are veterans who have served our country as members of the Armed Forces. Only 4% of dying veterans die within the VA Healthcare Network. This means 96% of these veterans are cared for by hospice and healthcare professionals in communities across the U.S.

While each veteran’s experience is personal, veterans do have a shared sense of a culture. Gaining a better understanding of this culture, how the experiences of military life may impact veterans, can help loved ones and professionals find ways to better support these veterans in their journey through serious illness and death.

Veterans Day is November 11. Read the Fact Sheet on Veterans and End-of-Life Care available in HFA's Hospice Information Center and watch the video below to learn about a program at Heartland Home Health & Hospice that connects active service members with hospice patients who are veterans.

Maria Shriver on Hospice

Watch a short video of Maria Shriver sharing a recent hospice experience with Hospice Foundation of America.

In honor of National Hospice Month, HFA is making Ms. Shriver’s video available for use by hospices and other health care providers online and/or in the form of broadcast-ready public service announcements. Request more information here.

November 2010 Palliative Care Grand Rounds

The November edition of Palliative Care Grand Rounds for 2010, highlighting blog posts related to hospice and palliative care, is up at the Compassion & Choices blog.

Recognize Hospice This November

November is National Hospice Month, a month to recognize the invaluable work that hospices do each day, to educate consumers about the benefits of hospice, and to honor those who cope with caregiving and end-of-life issues in their own lives.

HFA has some excellent resources about the myths and facts about hospice care and information on choosing hospice. Also see HFA's Hospice Information Center, where free programming is available to help hospices and community organizations educate staff and volunteers about the basics of hospice care, caregiving, and grief.