by Greg Jena, Manager, Marketing & Public Relations
Family Hospice and Palliative Care

Jim was a lung cancer patient whose dying wish was to renew wedding vows with his dear wife, Jerri. With Jerri at his bedside, sons Bill and Dave in attendance and their clergyman officiating, Jim’s wish came true. He wore a boutonniere. Jerri held a beautiful bouquet. There was even wedding cake and the traditional opportunity for the groom to kiss his bride. Family Hospice Quality of Life Program Coordinator Paula Church was on hand to take pictures.

Jim, Jerri and their family viewed the photos just before Jim’s death. They act as a lasting memory of an important family event that will forever be cherished. And now, Jerri and Paula Church have taken the next step in honoring Jim’s life by creating a video that celebrates both of their wedding ceremonies – including the very photos taken at the vow renewal ceremony.

Jerri’s wish was that this video be played as a memorial tribute at Jim’s funeral. The song that accompanies the video was chosen by Jim himself.

“Family Hospice – Wedding Day” is online because it is important to Jerri to get the word out not only about her love for her husband but also for her appreciation and love of Family Hospice and the staff that cared for her husband, and supported her and her family.

The experience continues to impact Jerri and her family in bereavement, as an ongoing lifeline to the memories they all share.

The video, along with Jerri’s personal Family Hospice experience, has created a great bond. Jerri found comfort in bereavement visits and sharing her memories of her life with Jim. She has come full circle, now sewing quilts to give to others living with loss. Jerri donates the quilts to families at The Center for Compassionate Care – the same place she and Jim renewed their vows.

Watch the video: http://www.youtube.com/user/FamilyHospice#p/u/4/gQE6q07EWQw

Spiritual Care is an important component of end-of-life care.

By Rafael J. Sciullo

Carol was a Family Hospice RN assigned to a local skilled nursing facility. One day while making rounds, she checked in on a patient named Mary, a lovely woman in her eighties who was nearing the final phases of her life-limiting illness. After updating the chart and making sure Mary was comfortable, Carol leaned over and asked “Is there anything else I can do for you?”

“Yes,” Mary replied, “could you arrange to have someone sit with me and pray?”

Faith, spirituality and cultural beliefs tend to play prominent roles for many of those experiencing a life-limiting illness. Embracing one’s faith aids in understanding not only the human experience, but the process of death and dying and can give some meaning to illness and suffering. In some instances, patients have been known to endure their suffering in the hope that it will lead to something good as they prepare for their new existence after life on Earth.

On April 13, Family Hospice and Palliative Care will serve as a local host to The Hospice Foundation of America’s 18^th annual Living With Grief ® CEU conference: “Spirituality and End-of-Life Care.”  Presented by The Institute to Enhance Palliative Care, this conference serves as an educational opportunity for local professionals such as physicians, nurses, social workers, clergy and counselors to earn continuing education credits while addressing spirituality during illness, death and grief.

The Hospice Foundation of America’s seminar includes clinical, ethical and spiritual experts from across the nation – and their discussion will be moderated by Frank Sesno, Director of the School of Media and Public Affairs at the George Washington University.

According to Leonard Sponaugle, M.Div., Spiritual Care Specialist at Family Hospice, this year’s conference will be proactive in nature. “This program will equip clinicians to provide from the start of the patient’s care what too frequently only chaplains provide during a crisis, or when the patient is actively dying.”

“Spirituality and End-of-Life Care” will discuss differences between spirituality and religion, while also addressing approaches to finding meaning at the end of life, including life review.

The Hospice Foundation of America’s presentation will be followed by a local panel discussion at The Center for Compassionate Care. Panelists include Rev. De Neice Welch, Pastor of Bidwell United Presbyterian Church in Manchester (and coordinator of the Transitions hospice program for African-Americans in the greater North Side),     Rev. Charles Starr, Chaplain at Shadyside Hospital, and Barbara Usher,  RN, PhD, a clinical nurse specialist for the Section of Palliative Care and Medical Ethics at UPMC.

The panel will offer the opportunity for attendees to gain a greater understanding through real-life experiences and give-and-take conversation.

It’s wise for clinicians to help dying patients find meaning through spirituality. Although they may not be able to discuss a person’s spiritual concerns in depth, healthcare professionals certainly should be able to identify those who have spiritual needs and act upon an appropriate referral to a spiritual care provider.

Family Hospice and Palliative Care offers non-denominational spiritual support to patients and their loved ones who request it. From our memorial services to the Meditation Room at The Center for Compassionate Care, every effort is made to respect and embrace people of all faiths.

Our own staff at Family Hospice has encountered social workers and nurses who have expressed a lack of insight into the role of spiritual care staff when caring for those at the end of life.  Numerous RNs and social workers said they were always under the impression that chaplains pray with patients and that was it.  A better understanding of roles and their meanings can only improve the patient experience.

Whether it be to address a life-limiting illness, life crisis, or daily stress, prayer and spirituality play an important role for many of us. As we all search for meaning and direction in our own way, it is our hope that professionals attending this conference will be better prepared to help their patients find the guidance they seek at end of life.

For those interested in attending: “Spirituality and End-of-Life Care” takes place Wednesday, April 13, 1-4:30 p.m. at Family Hospice’s Center for Compassionate Care, 50 Moffett St., Mt. Lebanon. Program is free; three CEUs offered for $25 (credit card) or $35 (check). To register, call 412-572-8747, or visit www.familhhospice.com and click on “Health Professionals.” Light refreshments will be offered and free parking is available.

Rafael J. Sciullo, MA, LCSW, MS, is President and CEO of Family Hospice and Palliative Care and Past Chairperson of the National Hospice and Palliative Care Organization. He may be reached at rsciullo@familyhospice.com or (412) 572-8800. Family Hospice and Palliative Care serves nine counties in Western Pennsylvania. Its website is www.familyhospice.com.

It’s never too early to discuss advance care planning.

By Rafael J. Sciullo

Over the course of a lifetime, families are faced with making a myriad of decisions. From deciding upon baby names, to finding the right home – from selecting colleges for your kids, to planning your retirement fund, all are important.

Some decisions may not be as pleasant and are even seen as stressful. Among the most difficult may be those that involve the impending death of a parent or grandparent. A recent article from Kaiser Health Newsindicates that experts think the role of surrogate decisions makers deserves more attention and support.

At Family Hospice and Palliative Care, our staff witnesses these decisions being made at various stages of a patient’s illness. As the Kaiser article points out, family members are oftentimes forced to make crucial decisions with little facts at hand and under extremely emotional circumstances. They find themselves trying to determine what their loved one would have decided to do if they were able to choose. As is often the case, families are forced to make critical decisions before they’ve even had time to digest their loved one’s situation.

The uncertainty of thinking “What would dad want us to do?” or “Is this what grandma would have wanted?” can be avoided. It’s never too soon for anyone to engage in advance care planning. By having well thought out discussions with family and health care professionals, individuals can make sure that their wishes are respected while taking the burden of stressful decisions off of loved ones.

Hospice offers a team approach to care tailored to the patient’s wishes. But along with caring for the patient, hospice provides support for loved ones as well. Through education and outreach, family members are encouraged to discuss advance care planning with their loved ones. Family Hospice and Palliative Care offers tools for individuals and families to get the process started.

A visit to our website at www.familyhospice.com provides visitors with a large, easy-to-navigate menu of information. Click on Patients & Caregivers, then on Hospice. Scroll down the page to find a series of videos called “Just Talk About It.” These one minute presentations are perfect conversation starters for end-of-life care. Produced by The Take Charge Partnership in conjunction with the Pennsylvania Department of Aging, the videos cover advance care planning, along with hospice, care giving and aspects of pain management.

On the same page of our website, we offer a link to the Pennsylvania Advance Health Care Directive form. This downloadable legal document protects patients’ rights to refuse any medical treatment not wanted, or request treatment that is desired, in the event that a patient cannot make the decisions independently. The form includes Durable Healthcare Power of Attorney and Living Will provisions.

Family Hospice is also reaching out via a first-of-its-kind program locally, with the intention of increasing understanding of and access to hospice care among African Americans living in Pittsburgh’s Greater North Side community. The program, called Transitions, is offered in partnership with Bidwell United Presbyterian Church and Northside Christian Health Center. Recognizing the opportunity to aid an underserved population, Transitions is designed to meet the specific needs of African-American patients. Through this effort, advance care planning can become part of the conversation with more people than ever before.

Kathy Brandt, senior Vice President at the National Hospice and Palliative Care Organization, was recently quoted as saying that these types of decisions are best made after asking a lot of questions. “The most effective surrogate decision-makers are those who aren’t afraid to ask ‘What are the benefits and burdens of the decision?’ ‘What are other options?’”

The bottom line in all of this is to take the burden off of family members and loved ones while ensuring patients’ wishes are honored. Stressful moments are not the ideal time to make critical choices. Families put a lot of thought, time and effort into life’s big decisions. No one wants to decide upon which home to buy while under extreme pressure – or to choose a retirement plan after giving it only a few seconds of thought.

End-of-life care is one of life’s most important decisions. Plan it ahead of time. It deserves conversation and careful consideration.

Rafael J. Sciullo, MA, LCSW, MS, is President and CEO of Family Hospice and Palliative Care and Past Chairperson of the National Hospice and Palliative Care Organization. He may be reached at rsciullo@familyhospice.com or (412) 572-8800. Family Hospice and Palliative Care serves nine counties in Western Pennsylvania. Its website is www.familyhospice.com.

Editor’s Update: John Baumgarten, 93, wrote and sings “Goodbye to the Sweetheart of My Dreams”–a song dedicated to his late wife, Madeline. John sang the song to Madeline on the day she was buried. Since then, every day he can, John visits her grave and serenades his sweetheart. Just click on the image to check out the video.

By Rafael J. Sciullo, MA, LCSW, MS
President and CEO of Family Hospice and Palliative Care

John is a spry, likeable man with bright eyes. At 93, he recalls names, dates and events with impressive clarity. He will gladly tell you about his family and he still remembers the day he met Madeline, the love of his life, like it was yesterday. Actually, it was the early 1930s – and to this day John remarks that he was even impressed by the way she said “hello.”  He married his love in the summer of 1937.

John and Madeline first came into contact with Family Hospice and Palliative Care in December of 2007. A cardiac patient, Madeline’s initial prognosis was one to two months. But John says she endured a year and a half past that prediction, passing away just days before their 72nd wedding anniversary.  [Read more…]