Meet HFA's Bereavement Specialist

We'd like to introduce you to Phil Carpenter, who joined HFA in April 2011. Mr. Carpenter brings a wealth of experience in caregiving and hospice. In this interview with HFA's Lisa Veglahn, he shares what brought him to this work; what he has learned from his years of direct care and supervision; and what he is looking forward to in his new position at HFA. He discusses some of HFA's new programs, and why he's pleased to be a part of them.

Phil Carpenter, MDiv, Program Officer & Bereavement Specialist, HFA

Q. Tell us about your background, and how you ended up working in hospice?

A. I received a degree in music education, and my intention was to pursue an advanced degree in music. But I had been exploring theology at the same time through parish-based work experience, and realized that I was searching in another direction. So I switched my master studies to theology, with an emphasis on pastoral care and counseling. This was a great decision for me—I gravitated to a profession that I felt had meaning and where I knew I could help people.

I worked eight years in a church-based setting—education, youth ministry, hospital visits-- with the common thread being pastoral care and counseling. One great influence on me was my studies with Dr. Wayne Oates, a well-known theologian who also had a medical degree. His work and guidance were key in helping me understand the connection between pastoral care and research. Additional work with Andy Lester and Wade Rowatt rounded out a solid background in this field of study.

While in seminary, my wife was involved with the development of a new, state-of-the-art continuing care retirement community. Because of her work I spent a lot of time with the elderly population, and found that I truly enjoyed the work. And of course end-of-life issues were always there; many of the residents declined and eventually died in the facility. I also worked on some projects with a local hospice while I was working at a church in Winston-Salem, NC. So throughout my career, this thread continued.

As many people do, I took a “detour” in my professional life for a while and worked in corporate administration at Pepsi-Cola! This job eventually took me to Washington, DC, but I realized that it was ultimately not the right match. I knew I was not ready to go back to parish-based ministry, but someone I knew put me in touch with what was then Hospice of Prince George’s County, and I began work with them as a Bereavement Counselor.

Eventually this hospice became part of Capital Hospice (now Capital Caring). I continued to do bereavement work with them, but I also expanded to supervising the Social Workers, Bereavement Counselors, Chaplains, and Volunteers.

Q. What did you enjoy most about your work at Capital?

A. I loved being an advocate for the hospice staff. My work gave me a great opportunity to help ensure that all of the team members’ voices were heard. Of course, the medical issues facing a hospice patient and their loved ones are always paramount. But often, it became clear that the main concerns that needed to be addressed were spiritual ones, or even financial—the house was too cold for the patient to be comfortable, because the family couldn’t afford the gas bill. I really enjoyed supporting and representing the full range of hospice team members, and working together to see how that team could support the patient and family.

Q. What challenges did you find in this work with hospice team members?

A. I learned a great deal about hospice from an administrative standpoint. While the main focus is always the patient, there are still administrative tasks that are essential for the staff—screening and hiring, budget management, evaluations, etc. Without good administrative support, the potential for burn-out is enormous—and it’s critical to avoid that situation before it happens. Sometimes we would bring in outside support services; other times we would creatively utilize the expertise of our own staff.

Another interesting challenge for me was moving from a small, independent hospice program to a larger program covering a wider geographic area. Capital provides services in Washington D.C., Maryland and Virginia—so that’s three different jurisdictions, three different sets of statutes and laws. More importantly, there is a great deal of diversity among the communities and neighborhoods we served. So the challenge was always balancing consistency in terms of how the teams were treated, yet giving the teams the ability to respond appropriately to the specific needs of their own community.

Q. You bring an interesting perspective to this work, having served in parish-based ministry for a number of years. How did that work prepare you to work with those who are dying?

A. Actually, I was startled to find how many pastors I encountered, both during my time in ministry and my time in hospice, who were so uncomfortable with death and dying! There is just not enough emphasis given to end-of-life issues in ministry training, even at the Master’s degree level, especially given that pastors are following certain academic “tracks.” I understand why people focus on certain areas of the ministry—but what a mistake, to turn out well-trained preachers or researchers who are still so profoundly inexperienced and uncomfortable visiting hospitals, going to patients’ bedsides, and offering that comforting presence to those who are facing death.

Q. After your work at Capital, you moved into another field that makes many people uncomfortable—pediatric palliative care. Tell us more about that transition.

A. I really enjoyed my work at Capital, but after about 9 years was ready for some new challenges. Two of my colleagues, Dr. Carlos Gomez and Susan Rogers, had a keen interest in how to provide better care and make the dying experience better for children, based in part on some experiences at Capital. Their commitment and passion around this issue propelled them to start a new organization—the District of Columbia Pediatric Palliative Care Collaboration (DCPPCC). They developed a new collaborative model and invited me to join the staff.

It was a fun, challenging – and sometimes overwhelming - place to work! We did not provide direct services, but did offer education, advocacy, curriculum development and training; it was a very new model. Working there provided me the opportunity not only to learn but also to speak at both national and international conferences on the subject of pediatric palliative care. I continued to be active in grief-related issues, training area healthcare professionals on the needs of grieving families, especially as those needs related to the decline and death of children.

While it was a wonderful experience, I ultimately realized I was ready to go back into the hospice field, and was so pleased to be able to join the staff of HFA in April of this year.

Q. What are you doing with HFA, and how does your work differ from your time in hospice setting?

A. While I’m not, of course, providing any direct care, I do still feel lucky to work with hospice professionals each day by designing educational programs, developing resources, and offering support in their daily work. HFA’s type of programs allow a certain freedom that I appreciate—a freedom to develop new resources or ideas based on a need from a professional, or a question from a family member that reminds us of a need for a certain type of information. For instance, based on both my work at Capital and some research I’ve been doing, I realize what resources might be lacking for hospice volunteer training, especially for those volunteers who work with bereavement counselors or spiritual care professionals. I’m learning more about the materials that are – and are not – available, and how HFA can help fill in some of those gaps.

Part of my role is to answer phone and email questions from both professionals and consumers; we generally answer more than 30 questions/ month. When you pick up the phone or click on that email, you never know who is calling or what their question will be. It has been reassuring to remember that it’s okay to say, “That’s a great question—and I don’t know the answer to that right now!” To listen and to be honest about what I do or do not know; and then, of course, to always ensure the person that I will find answers and resources and get back to them as soon as possible.

Q. You spent a lot of time in your previous positions working in the communities you serve. What opportunities will you have to do that with HFA?

A. I’m excited that I have opportunities to help HFA become more visible within the local communities of DC, Maryland and Virginia. Whether it is participation in local end-of-life oriented consortiums or committees, service on boards, or presentations at various governmental or other business agencies, I welcome the chance to talk about the innovative work that HFA does, and how we support and complement the work of local hospices all across the country. And, returning to my roots in pastoral care and counseling, I am privileged to collaborate with hospices and other organizations in regards to providing the needed bereavement services in times of local, regional or national disasters. In this role I get to pull together much of my training and experience and use it to be of service and support for those in need during a difficult time of grief and loss. It is truly an honor to work in this capacity.

And, on a broader scale, I am pleased to represent HFA at conferences where I not only share our products and materials but also engage conference attendees one-on-one in discussions about the work they are doing and brainstorm about how HFA might complement their professional interaction with the public. For example, I recently represented HFA at the ADEC (Association for Death Education and Counseling) meeting in Miami. That provided an great way to connect with an international audience (at the first session I sat between groups from Canada and Australia) and learn a bit from them about their end-of-life care needs, thus giving me (and HFA) a fresh perspective on what we are doing and why it matters – and ideally what we can learn from folks from all parts of the country and world to improve our services. It was also uplifting and encouraging to hear ideas discussed in the sessions, and learn the outcomes of the newest research being conducted.

Q. Are you working on HFA’s newest fall educational program, the “New Perspectives” series?

A. Yes, I am! The cutting-edge work that HFA is doing in grief and bereavement was always of great interest to me when I was working in hospice and palliative care, so I am pleased to be involved in the new fall program, “Beyond Kubler-Ross: New Perspectives on Death, Dying and Grief.” There is so much information out there on grief—and so much misinformation! The program is a great opportunity to explore some of the pioneering thinking around grief and bereavement, as well as a chance for professionals to examine some of the newest thinking and models, and how to apply that to their everyday work. Having had hands-on experience in hospice care, I know how important it is to bridge that gap between research and practice, and think this program will be a great way to do that.

In this fashion, and in others that we are continuing to discuss and research, we are seeking to create those services and products that will meet needs that have previously been unaddressed.

Q. What advice do you remember as being important for hospice professionals in their daily challenge to “bridge that gap”—to serve patients and families, keep up with the latest thinking in the field, and somehow still have time to care for themselves?

I always used the image of a worn-out sponge—if you squeeze it too much without replenishing, it will eventually dry up! And once you have gotten to that point professionally, you cannot be effective as a caregiver. But you always want to be sure that you are “filling up” with the best information out there.

In my own work, I always remind myself about the lessons I learned from “Miss Mary.” When I was working at a small church in Kentucky, I heard again and again about Miss Mary—how she’d visit someone who was sick or in need, and after she came by how it all somehow seemed better. I sought her out to learn more about her “secret.” She had no idea, she said, why she had this reputation. “This is what I do,” she said. “I go to the home, I walk in, and I sit there.” I pursued my questioning—“but what is it that you say that is so meaningful, so helpful?” She looked at me, surprised, and just said, “Oh I wouldn’t know what to say. I just sit there. And I leave when it seems right to leave.”

That presence, that genuine concern and ability to listen when people are in need—that had an impact in a way that an academic “model” or “theory” might never have. Hospice professionals and others who work with the dying should always challenge themselves to really look at what they say, what they do—challenge themselves to think about what is offered to patients and families every day, and be open to new ideas and new possibilities that can bring both the newest information and the most compassionate presence possible. That will make this work meaningful and purposeful, and will keep that sponge from going dry.

Supporting Men When They Grieve

Perry Garfinkel wrote about the differences in how men and women grieve in yesterday’s New York Times and discussed the growing number of bereavement support groups geared to men in hospitals and hospices around the country.

Concern about reaching men in grief has gained new urgency with shifting demographics. The number of men age 65 and older increased by 21 percent from 2000 to 2010, nearly double the 11.2 percent growth rate for women in that age group, according to census figures. As the gender gap in life span narrows, experts suggest that more men will be facing the loss of loved ones, particularly spouses.

Many will be not be prepared for the experience. The loss of a spouse often is crushing for men physically as well as psychologically. In a 2001 paper published in The Review of General Psychology, psychologists at the University of Utrecht in the Netherlands confirmed earlier data showing widowers have a higher incidence of mental and physical illness, disabilities, death and suicide than widows do. While women who lose their husbands often speak of feeling abandoned or deserted, widowers tend to experience the loss “as one of dismemberment, as if they had lost something that kept them organized and whole,” Michael Caserta, chairman of the Center for Healthy Aging at the University of Utah, said by e-mail.

The Harvard Bereavement Study, a landmark late 1960s investigation of spousal loss, found that widowers experienced the death of a wife as a multifaceted tragedy, a loss of protection, support and comfort that left many at sea. The men in the study relied heavily on their wives to manage their domestic lives, from household chores to raising their children, the researchers noted.

HFA Program Officer & Bereavement Specialist, Phil Carpenter, MDiv, commented on the article, "For too long there has been somewhat of a 'one-size-fits-all' approach to bereavement. The truth is there are many different ways in which men and women cope with their losses. It is important to remember that just as people are individual, so, too, is their grief."

Research is also changing views of bereavement specialists in the field as to how both men and women grieve, and how that grief differs:

There are also differences in the length of time men grieve, compared with women, and how long it takes to move on. An old axiom that “women mourn, men replace” turns out to be untrue.

“It used to be thought that men grieve acutely and heal more quickly, and that women grieve chronically over a longer time period,” said George A. Bonanno, a clinical psychology professor at Columbia University in New York.

But now, Dr. Bonanno said, many researchers believe that grief follows a more complex pattern in both men and women.

“No matter what sex, we oscillate between positive and negative emotions, between waves of sadness about the loss and hope for the future,” he said in a telephone interview. “This can be frustrating for men, who often seek the ‘quick-fix’ approach.”

Sherry Schachter, director of bereavement services at Calvary Hospital in the Bronx and a grief specialist for 25 years, said in a telephone interview: “While women grieve intuitively, open to expressing their feelings, men are ‘instrumental’ grievers. They’re not comfortable with talking about their feelings, and they prefer to do things to cope.”

Both Dr. Bonanno, and Dr. Schachter, quoted in the article, are panelists in HFA’s upcoming New Perspectives educational program, Beyond Kübler-Ross: New Perspectives on Death, Dying, and Grief. Available beginning November 10, 2011, this program explores the most current theoretical perspectives on death, dying, and grief, emphasizing areas where understandings have been challenged and developed since the 1969 publication of Kübler-Ross’ epochal work, On Death and Dying.

The New York Times also features the voices of five widowers who attend a men’s bereavement group at Calvary Hospital and comments are being shared on the Well blog.

Beyond Kübler-Ross Program Filming Underway at Doughjangles

The inaugural shoot for HFA’s first New Perspectives program, was filmed yesterday in Lexington Park, Maryland. Spence Levine, Vice President of Programs, interviewed a mother who lost one of her twin sons, Eric, at age 11 to cancer. She talked about the continuing bond she has to her deceased son, held initially through letters, and later through signs that he is keeping his promise to “take care of Mommy and the rest of the family.” She discussed their pediatrician’s effort to pull her surviving twin son, Aaron, from a deepening depression by suggesting he write a business plan to take an activity he enjoyed (baking – inspired by his brother) and create a company.

At their next doctor’s visit, the pediatrician gave Aaron $20 as the first investor and thus began “Doughjangles” - home baked sweets that are as therapeutic for the mother and Aaron to bake as they were delicious for us to eat. Doughjangles has been instrumental in helping the family through their grief since Eric’s death three years ago.

The story of the company has been featured on Oprah, Paula Deen, and CBS News. HFA’s coverage highlights how the baking helps both the mother and son work through their grief. Besides speaking with us, HFA shot them interacting while baking… and of course, Spence and his team got to sample the goods!

Beyond Kübler-Ross: New Perspectives on Death, Dying, and Grief (available beginning November 10, 2011)
Register your Organization today!

Available only on DVD, this program explores the most current theoretical perspectives on death, dying, and grief, emphasizing areas where understandings of dying, death, and grief have been challenged and developed since the 1969 publication of Kübler-Ross’ epochal work, On Death and Dying. The presentation emphasizes the practice implications of these new perspectives and would be useful to a range of professionals who counsel persons who are dying or bereaved, including psychologists, counselors, clergy, social workers, nurses, physicians and other health care workers, as well as educators, teachers and school-based personnel. In addition, it would benefit individuals who offer education on loss, grief, dying or death.

Interested in advertising and partnership opportunities for this program? View HFA's other upcoming education programs.

Looking for Support? Twinless Twins (www.twinlesstwins.org) provides support for twins and other multiples who have lost their birth partners due to death or other estrangement at any age.

Focus on Cultural Diversity and Hospice Care

HFA has developed "Addressing Cultural Diversity in Hospice Care," a free online webinar that looks at how, and why, different cultures may, or may not, utilize hospice. This tutorial aims to prepare and equip hospice organizations, and its providers and volunteers, with strategies and information to meet the needs of culturally diverse patients and loved ones.

"It is a human instinct to hope for comfort, peace, and dignity, and to be surrounded by loved ones at the end of life," says Lisa McGahey Veglahn, Program Officer at Hospice Foundation of America. "And yet, there are differences in how people cope with dying and death." HFA's new free online webinar looks at how backgrounds and cultures can influence end-of-life experiences, including how people deal with a terminal diagnosis and grieve a death. Many elements make up a person's culture -- language, social circumstance, religion and spirituality, sexual orientation and gender. All of these can impact how individuals find meaning and purpose in their living and dying and come to terms with the loss and remembrance of family and loved ones. As the Office of Minority Health notes, "Quite simply, health care services that are respectful of and responsive to the health beliefs, practices and cultural and linguistic needs of diverse patients can help bring about positive health outcomes." The outcome can include a good hospice care experience at the end-of-life.

HFA's new program, plus additional resources and Fact Sheets, is available at no charge. Free Continuing Education credits are available for a wide range of professionals. This program is part of HFA's Hospice Information Center, an extensive online library that also includes programs such as Understanding Hospice, Family Caregiving, and Coping with Cancer at the End of Life. The programming provides hospices and other community organizations the opportunity to educate staff and volunteers about the basics of hospice care, caregiving, and grief, and links are provided to guide viewers to more information on a variety of subjects. Other resources are available for consumers, to help family and friends learn about hospice and how it can help people cope with some of life's most challenging situations, in a format that is accessible and understandable. Resources are also available in Spanish and Chinese.

This project is provided through the support of a grant from the Centers for Medicare & Medicaid Services (CMS) to support hospice and end-of-life care outreach and education. CMS funds of $571,000 with HFA in-kind services of $5,710 are funding a variety of outreach and educational programs, including this project.

The Spiritual Side of Bereavement

HFA Senior Consultant Kenneth J. Doka, PhD, MDiv, writes in the Religion section of the Huffington Post about spiritual reactions to grief:

We often think of grief as an emotional reaction, one where individuals may experience a range of reactions such as anger, guilt, sadness, loneliness and yearning, to name but a few. Yet grief is more than that. It affects us physically, sometimes even compromising the health of survivors. It influences how we think and how we behave.

Grief affects us spiritually.

These spiritual reactions to grief can occur to individuals who do not adhere to any religion or even have any theistic beliefs. Broadly defined, the essence of spirituality is how we find meaning in life. For some that involves distinctly spiritual concepts. Others may live by a more humanistic frame. Lisa did. She and her brother Jay grew up in home that eschewed religious beliefs. Yet, they were taught and internalized a deeply humanistic ethos. While the world was, they believed, a very random place, Lisa also felt that ultimately "what goes around comes around." Both Lisa and her brother fervently cared for others. Both worked in human services. When her brother Jay was killed by a distraught, crack-addicted mother as Jay tried to remove children from this neglectful, drug-infested home, Lisa's basic beliefs were shaken.

HFA's 2011 Living with Grief^® program focuses on Spirituality and End-of-Life Care, with a national education program shown at 1,000 sites across the United States and Canada, and featuring an in-depth webinar series and companion book.