Transitions in Dying and Bereavement (Excerpt)

introduction

SignpostsPrinciples, Values, and Assumptions

After a particularly long and difficult meeting with a patient, Mr. Perryman,and his family, the counselor sat down next to a colleague feeling drainedand upset. The colleague asked what was wrong. The counselor explainedthat she had expected to meet with the man and his family to decidewhether he would stay at the hospice or go home to die. Instead, she dis-covered that before they were able to make any plans, they really neededto talk openly with each other about some unresolved issues; namely, the cir-cumstances surrounding how Mr. Perryman’s mother had died 14 years ear-lier. Apparently, her death had been so disturbing and painful for the familythat any discussion about Mr. Perryman’s death was being avoided, makingthe meeting with the counselor very difficult.

“Oh, so that’s what you do,” exclaimed the colleague. “I thought youjust sat at the bedside and held the patient’s hand.”

As we reflect on what palliative and bereavement counselors actually do, sev-eral questions come to mind. What are their aims, and how do they accomplishthese aims? How can they work as a team with nurses, physicians, other profes-sionals, and volunteers? How can this team work together with terminally ill orbereaved individuals to improve the overall quality of the service? This book at-tempts to answer these questions by examining, in theory and in concrete detail,the psychosocial care of individuals who are dying and bereaved. The term psycho -social encompasses the “emotional, intellectual, spiritual, interpersonal, social, cul-tural and economic dimensions” of dying and bereavement (Bates et al., 1993,p. 29). This book identifies the key transitions that most dying patients and theirfamilies face and describes the interventions that are most likely to help. The au-thors believe it is possible to identify and anticipate common experiences and stillremain open to the awesome mystery of this work, the varying disease processes,and the unique and exceptional people involved.

1

Although many materials provide information about the medical care ofthose who are seriously ill and dying, or about bereavement, resources that focuson psychosocial aspects of care from diagnosis through bereavement are scarce. Thegoal of this book is to improve overall care by making psychosocial aspects moreidentifiable and predictable. This information can be used by newcomers to thefield and by experienced practitioners alike.

WHAT BRINGS PEOPLE TO THIS WORK?

People who work in hospice palliative care inevitably face well-meaning, incredu-lous, or concerned friends and family members who ask the question, “Why [orhow] do you do it?” Hospice workers may even ask themselves the same question.For some health care providers, the answers change over time as does the abilityto ask and answer this question. Following are the reflections of counselors work-ing in hospice palliative care. The time periods in parentheses indicate years of ex-perience in the field.

2 Victoria Hospice Society

Barb Landell (1 year)

The experience of my mother’s death and my subsequent bereavementwas a transformative process. Now, I come from a place of acceptanceof death and know that the pain of grieving is okay. I like to expresscompassion and caring. I find it meaningful to work in a team and tobe involved in profound experiences with what is real, death and loss.

Mairi Scanlan (5 years)

Hospice work was a natural progression from what I was already doingas a social worker in an acquired immunodeficiency syndrome (AIDS)organization. When I was working in the AIDS organization, workingwith the palliative people felt right. I felt more involved, more buzzedwith the people who were dying. I felt entrusted with the stories ofthese guys, like a repository of their stories. Getting to know who peo-ple really are is a tremendous honor.

WHO WE ARE: VICTORIA HOSPICE SOCIETY

This book was shaped in large part by our counseling practice at the Victoria Hos -pice Society in Victoria, on the west coast of Canada. It is a relatively large hos-pice, palliative care, and bereavement program in a community of approximately

Signposts 3

Pauline Johnson (8 years)

A common thread in my life and work has been grief related to loss,change, and aging. I came to Victoria Hospice looking for an exchangeof skills. I wanted a tangible experience to help me to better understandloss and change and I offered my skills and experience in return. I in-tended to be a volunteer but quickly became an employee.

Caelin Rose (10 years)

Previously, I had worked as a paramedic and after focusing on the phys-ical and medical parts of death I became curious about the spiritualside. When I was working on a degree in counseling psychology, I dida practicum at Hospice. I wanted to sit in the great unknown and getto know more about myself through it.

Allyson Whiteman (11 years)

I started out as a practicum student. I remember I had a curiosity aboutdeath, dying, and grief. As a child, my grandparents died, and I wasprotected from it. As an adult I wanted to learn about grief in a differ-ent way. I was fearful and excited knowing that my beliefs about lifewould be challenged. But I also believe that death and grief give us anopportunity to realize what we’re capable of. As a counselor I love tosee people heal.

330,000. Founded in 1980, Victoria Hospice has a staff of approximately 100 full-time, part-time, and casual (on-call) professionals (filling 55 full-time positions)and more than 500 volunteers.

The three main authors of this book collectively share more than 45 years ofexperience as palliative and bereavement counselors with Victoria Hospice. MoiraCairns is a social worker and currently coordinates an extensive bereavement pro-gram. Marney Thompson has a background in child and youth care and workswith the palliative crisis response team. Wendy Wainwright has a social work andcounseling psychology background and is Manager of the counseling and bereave-ment services.

This book, however, was forged through the collective wisdom and experienceof all the social workers and counselors who have worked at Victoria Hospice since1980. They have challenged, supported, and mentored one another. They have ques-tioned their own practice, developed new programs and materials, and taught work-shops, always looking for ways to improve care. Many of them have worked closelywith the authors throughout the development, writing, and review of the book.

The counseling department is composed of men and women who represent adiverse spectrum of counseling approaches and life experience. Counseling servicesinclude pre-death counseling for patients and families on the inpatient unit and inthe community and bereavement counseling with individuals and groups. Fur -ther more, these counselors provide psychosocial support to the entire hospice teamand others in our community who care for seriously ill, dying, and bereaved indi-viduals. Many have become educators and consultants throughout BritishColumbia and Canada, and several are involved in research about the impact ofcounseling interventions in hospice and palliative care.

The experience and expertise of this team has grown from our work with themore than 800 patients and 1,800 family members registered with Victoria Hos -pice each year. Of this population, approximately 81% of patients have cancer, 6%have diseases of the circulatory system (e.g., heart disease), 3% have respiratorysystem problems (e.g., chronic obstructive pulmonary disease), 2% have problemsrelated to the nervous system (e.g., Alzheimer’s disease, amyotrophic lateral scle-rosis), and 8% have other diseases (e.g., end-stage renal disease, AIDS, hepatitis).Approximately half of the patients die in the hospice and half die at home, al-though some die in acute care or long-term care facilities.

Our partnership with counseling, social work, and other professional col-leagues, as well as organizations including the British Columbia (BC) CancerAgency, AIDS Vancouver Island, Amyotrophic Lateral Sclerosis (ALS) Society, andVancouver Island Health Authority, enhance both our practice and the writing ofthis book.


THE PRINCIPLES OF HOSPICE, PALLIATIVE, AND END-OF-LIFE CARE

Hospice and palliative care should ensure that dyingpatients and their families receive the best and mostappropriate care possible. Underlying this principleis the quote expressed by psychotherapist and Holocaust survivor Viktor Frankl:“The last of the human freedoms is the freedom to choose one’s own way.” In thecontext of hospice palliative care, one’s own way would be to die and to mourn ina way that is congruent with how one has lived.

The focus of hospice palliative care is to relieve suffering and improve thequality of living and dying. This kind of care is appropriate for any patient and/orfamily living with a life-threatening illness

• Due to any diagnosis

• With any prognosis

• Regardless of age

Hospice and palliative care aims to address

• Physical, emotional, psychological, social, spiritual, and practical concerns

• Preparation for, and management of, self-determined life closure and thedying process

• Loss, grief, and bereavement

Hospice palliative care may complement and enhance acute treatment, or it maybecome the total focus of care (Canadian Hospice Palliative Care Association[CHPCA], 2002).

CORE VALUES OF HOSPICE PALLIATIVE CARE

This book is written under the assumption that hospice and palliative care are mosteffectively delivered by an interdisciplinary team that “typically includes one ormore physicians, nurses, social workers/psychologists, spiritual advisers, pharma-cists, personal support workers and volunteers and may also include physiothera-pists, dieticians, occupational, recreational, and integrative therapists, and others ”(CHPCA, 2002). As part of the interdisciplinary team, counselors and other psy-chosocial care providers focus on the aspects of illness, death, and bereavement thatlie beyond the physical. They recognize the social context that people bring to this

Signposts 5

“Everything can be taken froma man but one thing: the lastof the human freedoms—tochoose one’s own way.”

—Viktor Frankl (Cotter, 1999, p. 23)

journey—a lifetime of experiences, with particular hopes and fears and their ownways of coping with stress or problems (Price, 2001; Sheldon, 2001).

Psychosocial care encompasses a view that acknowledges the wholeness andintegrity of each person and family. Working within a medical environment, whichmay or may not support holistic care, it is important that psychosocial profes-sionals have ways to formalize their particular perspective and approach to care.The counseling team at Victoria Hospice finds their values effectively reflected inthe 12 foundation values set out by CHPCA:

1. Each person has intrinsic worth as an autonomous and unique individual.

2. Both life and the natural process of death have value; both provide opportu-nities for personal and spiritual growth.

3. Patients and families must have their suffering, expectations, and concernsaddressed.

4. Care is guided by quality of life as defined by the individual.

5. Caregivers enter into a therapeutic relationship with patients and familiesthat respects dignity and integrity.

6. The patient decides with whom information is shared.

7. The patient participates in informed decision-making.

8. Care is patient-centered and family-focused.

9. All aspects of care are provided in a manner that is sensitive to the patient’sand family’s personal, cultural, and religious values, beliefs, and practices;developmental state; and preparedness to deal with the dying process.

10. Care is provided only when the patient is prepared to accept it.

11. A unified response to suffering strengthens communities.

12. Access to hospice palliative care is assured to everyone without discrimination.

USING THIS BOOK

This book is structured to mirror the transitions that occur as patients and fami-lies follow the journey from diagnosis to death and through bereavement. It iden-tifies significant transitions, defines the psychosocial issues that each patient andfamily may face, and suggests interventions that can be used by those who workwith these individuals. When health care providers, patients, and families haveprior knowledge of what to expect, everyone can better anticipate the journey andthereby allay their sense of anxiety, fear, and powerlessness. To achieve this goal,


Signposts 7

In My Own VoiceThe JourneyKatherine Murray

The adventures of life provide us with great lessons as we care for peo-ple who are dying. Several years ago, my family prepared to head on ajourney. It was time to pack our bags, rent our home, and head out.Because we are seven (five children, Ted, and myself), the planningseemed especially large, and the journey seemed more awesome than ifI were traveling alone.

We determined to head south into Mexico and Central America.We bought a tape to learn Spanish and eventually mastered a grandtotal of four words! We began to ask questions and search the literature.We heard many scary things—we heard of robberies, murders, and kid-napping. One person confided that he was not sure we would all comehome alive. That was very unnerving. It took courage to do the finalpacking.

Eventually, one drizzly, west coast day, leaving our comfort zonebehind, we headed south into uncharted territories. We lived in fourdifferent communities in Mexico and traveled through Guatemala. Welived amongst the people. We broke tortillas with them, heard theirstories, and saw their struggles. We learned to speak their language andappreciated the warmth and kindness that we were shown. We grewcloser as a family and stronger in ourselves. Our dreams and goals werereached, and the journey was all that we needed and wanted it to be.

As I prepared to teach a palliative care workshop, I contemplatedthe parallels between the journey that we went on and the journey ofdying. We needed to talk to people who had some ideas, some facts,

Katherine Murray, R.N.,B.Sc.N., is a nurse onthe Victoria HospicePalliative Response Team,a home care nurse, andan educator of nursesand home supportworkers in the care ofdying individuals.


about the territory we would be passing through; people who were notencumbered by fears based on imaginary dangers and unsubstantiatedstories. Dying people also need to be able to talk with someone who isacquainted with their territory. They need to be cared for by peoplewho have experience and knowledge about the myths and realities ofdying. They don’t need the sensationalism of dying, the Hollywoodversion, the news hour massacres, the stories of painful, traumatic deathsthat suggest that euthanasia is the only comfortable option. They needsomeone who has addressed their own fears, understands the challenges,and knows the resources available for the journey toward death.

We sought information and heard much advice on where to go,where to stay, and what to see. In our journey, we focused on what wasimportant to us. We met wonderful travelers whose focus was very dif-ferent. And so it should be. Each journey needs to be unique to providefor the diversity of individual goals.

When dying people are journeying, they too may want to collect in-formation. Some people want minute details. Others want only basic in-formation. Some may read voraciously or talk voraciously, or both. Theydo not want someone to tell them what, when, and how to do their dying!As members of the health care team, we should listen, help a person iden-tify what information is wanted, and then offer information and options.

In order not to interfere with a dying person’s journey, it is essen-tial that we realize our own biases, preferences, and agendas as a way ofseparating our journey from theirs. It is imperative that we do not at-tempt to send an individual on our personal journey, but rather, assistthem on theirs.

While in Mexico and Guatemala, we had two rough experiencesand needed a safe place to regroup and to build up the strength andcourage to move on again. We appreciated the good will of people whoresponded with generosity and kindness when they saw us hurt and dis-tressed and who offered us a refuge from the storm.

In the old days, hospice was a place of refuge—a place where theweary traveler could stop and obtain food and shelter, where the sickcould go to recover or to die. What we want to create is this kind ofsafe, secure place—where a dying person can find the courage to opendoors that are difficult to open, where he or she is safe to walk the

the information within this book is organized around two frameworks or models.These provide the context for understanding the psychosocial issues and needs thatpatients and families encounter as they move from a diagnosis of life-threateningillness, through death, and into bereavement.

The first framework is tied to a functional tool, used predominantly by med-icine and nursing, known as the Palliative Performance Scale version 2 (PPSv2)(Victoria Hospice Society, 2003). The PPSv2 is used throughout the book as aguide to key psychosocial issues that frequently occur at particular transitions ina patient’s disease process. Linking psychosocial issues to major PPS transitionsprovides a simple and effective way for people to orient themselves quickly to apatient’s and family’s concerns, improve communication among health careproviders, and identify relevant psychosocial interventions.

Following a death, the journey taken by bereaved loved ones is also tied to amodel of grief based on phases, which similarly improves communication and care.

This book may be used as a reference or clinical handbook. It is divided intoten chapters that encompass patients’ and families’ journeys through 1) diagnosis,treatment, and recurrence; 2) palliative care; and 3) bereavement. Informationabout children is in Chapters 2, 4, and 8. This is not intended to compartmental-ize children’s concerns, but to keep the information accessible. Each chapter con-tains the following sections:

• Case Study: provides a snapshot of one patient and his or her family at thetransition that the chapter discusses. Sections of the case study are used to giveadded focus to key considerations within the chapter.

• Key Considerations: identifies significant psychosocial issues within each ofthe transitions. Although some issues are apparent at more than one transi-tion, they will be attached or found at the PPS level in which they are mostcritical.

Signposts 9

walk to death, where there is someone who is not afraid to listen andwill not need to silence the fears if and when they are expressed, wherequiet companioning can nurture when words are no longer needed orwhen English is no longer the language spoken.

Our journey south was rich in and of itself. The lessons from thatadventure continue to teach me in my work as a hospice nurse and educator.

• Assessment Questions and Interventions: provides templates that can beadapted to fit each patient/family context. Basic components include 1) listenand reflect back what is heard, 2) communicate understanding, 3) normalizethrough context, and 4) identify strengths.

• Our Experience: presents the perspective of counselors and others who providepsychosocial care to patients, families, and other team members at this transition.

• Team Issues: presents some of the major challenges or difficulties that com-monly confront health care providers in their work with patients, families, andeach other.

• Summary: places the transition in each chapter into the perspective of thePalliative Performance Scale or Phases Model of Grief.

• Reflective Activity: offers activities and exercises that may be used for teach-ing or team building to stimulate thought and introspection and help thereaders integrate the information into their knowledge and practice.

• Resources: provides suggested articles, books, web sites, and other resourcesthat the reader can consult for further information.

• References: lists specific references for quotes or other references used withinthe chapter.

In addition, a number of special features appear throughout the book, including:

• Perspective: tackles overarching topics that have broad application across allor most of the transitions and are strategically placed between chapters.

• In My Own Voice: inserts the views or insights of individuals other than themain authors.

• Focus On: covers issues and areas that are controversial, elicit a wide range ofviews, or are difficult to deal with.

• Sidebars: contains peripheral but important insights that add depth to mate-rial discussed in the main text.

This book is intended to convey a deep commitment to and belief in thevalue and efficacy of psychosocial care for dying and bereaved people. The personalstories, expertise, and insights presented may inform or inspire others to develophigh standards of psychosocial care. We hope that by identifying the particular is-sues that patients and families may face at certain transitions, a framework forwhat is predictable and typical will emerge. From this framework, a common lan-guage can develop that supports examination and understanding of the psycho -social aspects of patient and family care among those providing palliative and be-reavement care.


REFLECTIVE ACTIVITY

The purpose of this activity is to increase awarenessand insight into the highly personal, often surpris-ing ways that people become involved in hospicepalliative care. This activity may help to build rap-port and increase understanding within groups ofhealth care providers, volunteers, and others.

At a staff meeting, retreat, or training session, form small groups or pairs andask each other these questions:

• “What brought you to this work/organization?”

• “What impact does this work have on your life?”

• “How would your friends or family say this work has changed you?”

REFERENCES

Anderson, F., Casorso, L., Downing, G.M., Hill, J., & Lerch, N. (1996). Palliative PerformanceScale: A new tool. Journal of Palliative Care, 12(1), 5–11.

Bates, T., Connor, C., Connor, S., Corr, D., Gjertsen, E., Head, D., et al. (1993). A statementof assumptions and principles concerning psychological care of dying persons and their fam-ilies. Journal of Palliative Care, 9(3), 29–32.

Byock, I. (1997). Dying well: The prospect of growth at the end of life. New York: Riverhead Books.The Canadian Hospice Palliative Care Association (CHPCA). (2002). A model to guide hospice pal-

liative care: Based on national principles and norms of practice. Available at http://www.chpca.net.Cotter, A. (1999). From this moment on: A guide for those recently diagnosed with cancer. New York:

Random House.Price, S. (2001). Has something changed? Social work, pastoral care, spiritual counseling and

palliative care. Progress in Palliative Care, 9(6), 244–246.Sheldon, F.M. (2001). Social work in palliative care: Counseling and communicating. Progress

in Palliative Care, 9(6), 242–243.Victoria Hospice Society. (2003). Palliative Performance Scale Version 2 (PPSv2). Available at

http://www.victoriahospice.org/pdfs/PPSv2.pdf.

Signposts 11

“The nature of dying is notmedical; it is experiential.Dying is fundamentally a personal experience, not a setof medical problems to besolved.”

—Ira Byock (1997)

13

perspective

Support for the HospicePalliative Care Team

“Our work and our privilege is to assist and accompany othersinto the discovery of their own intrinsic wholeness existing be-hind illness, even when death is close at hand or when onefaces living with a chronic illness. [Such an] odyssey offers usthe possibility of recovering and cultivating our open, tenderhearts. Without such labor we may remain hard and armored,‘fragmented,’ ‘distressed and sick of heart.’ And it will show. Italways shows. Perhaps because we are servants of the healingarts, this is our vocation and our blessing. Our degree of will-ingness to walk this way with another is a measure of our ownbrokenness and our own wholeness. They are inseparable. It isimpossible to make contact with the life gushing up and out of these cracks if we are not opened.”—Santorelli, 1999,pp. 97–98

Often, the very things that make hospice palliative care so rewardingmake it difficult. Palliative care can be a source of great personal satis-faction and growth, yet it challenges professionals to face their own vul-nerability and the fragility of life. For the most part, people bring to thiswork excellent professional or clinical skills, maturity, life experience, andthe desire to make a difference. These are not enough to guarantee asense of fulfillment or excellence in their work, however. Health careproviders are at risk for high stress, illness, and burnout that leaves themwith a “hardness of the heart or sadness of the soul“ (Bowman, 1999,p. 7). They are asked again and again to form intimate relationships oneday and to relinquish them the next. They accompany patients as theyface death, are present during patients’ pain and suffering, and witnessgrief and sorrow following the death of a loved one. This constant exposure to death and grief results in a loss of innocence that separatespalliative care providers from their family and friends, who may only ex-perience such events a few times in their lives. Discomfort and fear, ac -companied by a lack of understanding, means others are often unable orunwilling to listen to such difficult experiences.

Because health care providers, just like all people, have differentpersonal styles, roles, training, or support networks, the impact of caringfor individuals who are dying and bereaved will vary among membersof the team. In addition, the impact within each person will shift andchange over time, depending on life stages, accompanying stresses, andgeneral resilience. It is not static or predictable.

COMMON STRESSORS IN HOSPICE PALLIATIVE CARE

Health care providers are prone to both internal and external stress in thehospice and palliative care field.

Internal Stressors

Internal stress occurs when health care providers experience discrepan-cies between their visions of what such care will entail and the reality of

14 Perspective

the experience. These discrepancies can occur within different aspects ofthe individual or the care experience. The following are some areas inwhich disparities between the ideal and the real often occur.

Beliefs and AttitudesCare providers may experience stress when they

• Have incongruent expectations about themselves and the care theyare able to provide

• Struggle with personal boundaries and define success by what theycan do for others

• See death as catastrophic, rather than as a normal part of life• Find their job doesn’t match their initial motivations in seeking em-

ployment

Skills and KnowledgeCare providers may also experience stress when they• Feel that their training, skills, or support are inadequate to help them

deal with difficult situations

Personality and Coping StyleIndividuals may not be comfortable working in hospice and palliativecare if they

• Are shy or timid or have low self-esteem in the face of a need for in-tense involvement

• Feel emotionally overwhelmed by multiple needs or demands• Struggle with repeatedly forming and losing relationships• Employ insufficient self-care strategies

Personal Life SituationIndividuals’ personal life situations may be incongruent with hospice andpalliative care if

• Personal life responsibilities compete with professional demands andbecome overwhelming

• Grief and loss in their personal life adversely affect life at work

Support for the Hospice Palliative Care Team 15

External Stressors

External stress occurs when health care providers involved with death,dying, and bereavement struggle with or find conflict within the nature ofthe work or context in which it is provided. Just as with internal stressors,people working in this field may experience external stressors in severalareas.

Patients’ and Families’ ResponsesIndividuals may experience stress if they have difficulty working with peo-ple who are

• Dying, grieving, suffering, and fearful• Angry, afraid, demanding, and uncooperative• Stressed and not coping/communicating very well• Facing multiple challenges and issues

Training and ExperienceIndividuals may experience stress if they are inadequately prepared to

• Work intimately with emotional/spiritual issues• Support those from other languages/cultures• Deal with the cumulative impact of death and grief• Provide relief for pain and other symptoms

Team IssuesBecause hospice and palliative care is a team effort, individuals within theteam may experience stress if they work within a team whose members

• Display a lack of trust, support, or respect• Are unclear about roles (uniqueness and/or overlap)• Have unrealistic expectations of one another• Have conflicting beliefs/values about teamwork• Work in isolation or with minimal communication

16 Perspective

Work EnvironmentExternal stressors are often evident in an organizational environment thathas

• Inadequate resources to meet the need• Unrealistic expectations (workload, schedules)• Conflicting beliefs about care, decision making• Poor communication• Perceived lack of appreciation

(Bowman, 1999; Riordan & Saltzer, 1992; Santorelli, 1999; Vachon,1995, 1998)

COMMITMENT TO SUPPORT

Regardless of how health care providers cope with the stresses inherentin this work, they all need some kind of support. Although support is a re-sponsibility shared among the individual health care providers, the team,and the organization, it is the organization’s commitment to ongoing sup-port that can really make the difference. It is critical that organizationstake a broad view of what is supportive and recognize that no single ap-proach will address everyone’s needs.

Support is most effective when it includes various approaches and ac-tivities such as social events, supervision and feedback, educational work-shops, and team involvement in problem solving and decision making.Support needs to address the broad range of internal and external stressorsexperienced by the team. It can be formal or informal, planned or sponta-neous, or within disciplines or interdisciplinary in nature. Support should in-clude nurturing for the head, the hands, and the heart. A skilled, cohesive,and supported team will provide better care, deal more effectively withchange and stress, and cope better with the grief and sorrow that accu-mulate over time. In addition, individual members will stay healthier.


Although each person may be concerned about support, it is mostoften the psychosocial professionals (e.g., social workers, counselors,psychologists, chaplains) on the team who take an active role in ensuringit happens. Their training, experience, and inclination prepare them toidentify and acknowledge emotion, address issues, and facilitate theteam process. They view people not in isolation but within their environ-ment or community, which helps them see the big picture or the contextof a situation. Although this may be a suitable role for the psycho socialcare providers, they need to be cautious about providing support for oth-ers at the expense of their own support needs. They, too, need support.When the care team is less structured or not available, support for the in-dividual health care provider becomes even more significant. In these sit-uations, self-care strategies are important in order for people to maintainor nurture themselves as they provide end-of-life care. They will need tobe proactive in finding ways to remain balanced and healthy.

Guiding Principles in Developing a Support Program

1. Professionals, volunteers, and others who work with dying patients andtheir families, before death and during bereavement, require support toensure that both their health and a high quality of care are maintained.

2. Primary responsibility for self-care lies with individual team members,with support from the organization.

3. Support programs must address the needs of the team, while beingsensitive to the needs of each individual.

4. Support programs must be valued, encouraged, formalized, andfunded by the organization.

5. Support must be embedded in an organizational culture that ac-knowledges the impact of working with death and bereavementand that encourages open communication, shared decision making,and risk taking.

18 Perspective

6. An organization’s commitment to support of health care providersshould be equivalent to its commitment to patients and families.

7. Support programs must be comprehensive, addressing varioussources of stress and offering a continuum of strategies moving fromprevention through crisis intervention, treatment, and rehabilitation.(Bell, 1997; Riordan & Saltzer, 1992)

Aspects of Effective Support Programs

• Ongoing training, mentoring, skill development, and consultation (e.g.,care of dying and bereaved people, team building, self-care strategies)

• Communication mechanisms (e.g., memos, information forums, news -letters, message boards)

• Celebrations, appreciations, transition rituals (e.g., to acknowledgeaccomplishments or retirements, to say “thank you”)

• Opportunities for renewal (e.g., vacation and sick time, sabbaticals,retreats, on-site massage/reflexology)

• Team building skill development (e.g., renewing vision and values,conflict resolution, planning, personal connections)

• Opportunities for humor and fun• Counseling and support groups for team members (e.g., addressing

per sonal issues, career planning, loss and grief, trauma, job loss,personal bereavement needs)

• Opportunities for closure (e.g., gatherings to memorialize and honorpatients, debrief difficult situations, acknowledge team losses)

• Activities that attend to the whole person and are physical, emo-tional, intellectual, spiritual, and/or social in nature

“I have noticed within myself that helplessness sometimes comesclothed in a guise of helping that easily carries me into doing,


planning, frantically scurrying about, imposing concepts on selfand others. Born of fear and self-dissatisfaction, it is a trap anda subtle form of manipulation. Have you ever noticed this withinyourself?”—Santorelli, 1999, p. 143

RESOURCES

BooksFirth-Cozens, J., & Payne, R. (Eds.). (1999). Stress in health professionals. New York:

John Wiley and Sons.Kabat-Zinn, J. (1994). Wherever you go, there you are. New York: Hype rion Press.Kearney, M. (1996). Mortally wounded. New York: Scribner.Moore, T. (1992). Care of the soul. New York: HarperCollins.Muller, W. (1999). How then shall we live? Toronto: Bantam Books.Remen, R. (1996). Kitchen table wisdom. New York: Riverhead Books.Vachon, M. (2000). Burnout and symptoms of stress in staff working in palliative care.

In H. Chochinov (Ed.), Handbook of psychiatry in palliative medicine. New York:Oxford University Press.

ArticlesMaddix, T., & Pereira, J. (2001). Reflecting on the work of palliative care. Journal ofPalliative Medicine, 4(3), 373–377.

Marquis, S. (1993). Death of the nursed: Burnout of the provider. OMEGA, 27(1),17–33.

Murrant, G., Rykov, M., Amonite, D., & Loynd, M. (2000). Creativity and self-care forcaregivers. Journal of Palliative Care, 16(2), 44–49.

REFERENCES

Bell, D. (1997). Report of the Victoria Hospice staff and volunteer support project (un-published).

Bowman, T. (1999). Promoting resiliency in those who do bereavement work. Lifeline,27 (spring), 7–9.

Riordan, R., & Saltzer, S. (1992). Burnout prevention among health care providers work-ing with the terminally ill: A literature review. OMEGA, 25(1), 17–24.

20 Perspective

Santorelli, S. (1999). Heal thy self: Lessons on mindfulness in medicine. New York: BellTower Publishing.

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Transitions in Dying and Bereavement (Excerpt)

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Transcript of Transitions in Dying and Bereavement (Excerpt)