PERT Program

Tip of the Month: January 2006


BOOK REVIEW: TEXTBOOK OF PALLIATIVE NURSING


Textbook of Palliative Nursing, 2nd edition, Betty R. Ferrell, PhD, RN, FAAN, and Nessa Coyle, PhD, RN, FAAN, Editors. Published by Oxford University Press.


At the heart of palliative care is each team member's commitment and dedication to helping people find relief, support, and meaning at the end of their lives. Palliative care teams in every setting — including nursing homes — need ongoing professional development and education to deliver the highest quality end-of-life care. The PERT curriculum and website is one excellent source for this information. Another wonderful resource is the second edition of the Textbook of Palliative Nursing, which was recently released by Oxford University Press. Betty Ferrell and Nessa Coyle, two internationally recognized nursing leaders, have edited an amazingly comprehensive book. The second edition provides updates to palliative care resources, extends to more care settings, and includes pediatrics as well as progressive chronic illness.

In Coyle's "Introduction to Palliative Care," she challenges us to provide better palliative care — education is the key to achieving this goal. Moreover, nurses everywhere can incorporate palliative care principles into their work. Clinicians serving residents in nursing facilities face tremendous challenges to provide the best palliative care for the frail chronically ill. Hopefully these few pearls from Ferrell and Coyles' book will bring at least one working idea to incorporate in your palliative care work.


Palliative Care Philosophy and Principles:
  • Incorporate palliative care earlier
  • Maintain a "whole person" viewpoint
  • Establish healing relationships
The World Health Organization defines palliative care as "an approach to care which improves quality of life of patients and their families facing life-threatening illness, through the prevention, assessment and treatment of pain and other physical, psychological and spiritual problems."¹ In her introduction to the text, Coyle outlines that America's approach of "too little, too late" palliative care is a persistently inadequate response for those who are facing the end of life. Instead, we must incorporate palliative care earlier in the course of a life-limiting, progressive illness. When palliative care is not incorporated in a timely manner, poorly managed pain, unmet patient and family goals, and late referrals to hospice are often the result.

Palliative care nursing reflects the "whole person" philosophy, addressing the patient and family's quality of life during the illness through:
The nurse's relationship with patients and families is crucial. This relationship, together with knowledge and skills, is the essence of palliative care nursing. The specific interdisciplinary team members who are involved may vary but the nurse is the primary liaison between team, patient, and family. The nurse can do much to guide and reframe interventions from doing everything to doing everything to provide comfort and healing. Remember that you touch others' lives and influence their experience each day.

At times, patients and families choose aggressive medical care and life-prolonging measures, even though these treatments may seem futile. The nurse's role is to seek to understand and respect these wishes. Coyle recognizes the frequent struggle and suffering of nurses and physicians as they grapple with their own mortality and with being asked to provide care they think is inappropriate or harmful for dying patients. Assessment and communication skills, as well as a firm foundation in ethics, are clearly important in working with these challenges. This textbook provides a wealth of valuable information in these areas.


Interdimensional Care, Tasks for Life Completion, Care-Receiver and Care-Giver Relatedness

Palliative care centers on patient and family choices. In chapter 2, Kathleen Egan and Mary Labyak outline hospice as intensive palliative care that honors the patient and family's experience, directed by patient and family goals, assuring autonomy, informed decisions, and dignity. They emphasize that illness, care giving, dying, and bereavement are unique personal experiences; dignity and quality can only be defined by those experiencing these life changes. People experience the last phase of their relationships and lives through many related dimensions. These include physical, functional, interpersonal, well-being, and transcendent dimensions. Nurses must approach end-of-life care and care giving with the understanding that a change in one of these dimensions affects other dimensions; for example, pain can affect function and interpersonal relationships. The term interdimensional care provides a fresh way of describing the whole person and the complexities and challenges at the end of life. The last phase of life and relationship provides continued opportunity for positive growth and development in the face of suffering.

In the beset-selling book, Dying Well: The Prospect for Growth at the End of Life,² author Ira Byock explained that dying people can develop a sense of completion to find meaning in their lives, experience love of self and others, say their good-byes, and surrender to the unknown. It is the role of the palliative care team to assist people in meeting these goals. Eagen and Labyak describe the Hospice Experience Model, which applies Byock's ideas. The model outlines developmental landmarks and task work for life completion and life closure. It is worth getting the full text of the tasks and posting at the nurses' work area for reference and learning. The landmarks include:
  • Achieving a sense of completion regarding one's worldly affairs, relationships with community, friends, and family
  • Achieving a sense of meaning about one's individual life as well as life in general
  • Experiencing the love of self
  • Experiencing the love of others
  • Accepting the finality of life and of one's existence as an individual
  • Developing a sense of a new self (personhood) beyond personal loss
  • Surrendering to the transcendent, to the unknown, "letting go"
Specific tasks are outlined and provide a framework and direction for the goals of our relationship with patients and families, which reflect the gradual transitions in life completion.


Hospice Referral Guidelines

Egan and Labyak's chapter also includes critical information about how and when to make a hospice referral. Since hospice is a valuable resource for nursing home residents, families, and staff, it's important for licensed staff and social workers in this setting to be well versed with this information and to make hospice referrals in a timely fashion.

The authors include guidelines from the Hospice of the Florida Suncoast on when to call hospice for consultation. Think about hospice when:
Hospice can help assess and provide support for resident and family. Many hospices have pre-hospice palliative care coordination services or resource centers. The number one comment made by hospice families after the death of a loved one is, "I wish we had hospice services earlier. We needed the help." Nurses can identify situations or changes in the resident's condition, which can assure timely involvement of intensive palliative care services through the addition of hospice.


Assessing Palliative Care Needs

We all struggle to find ways to incorporate palliative care in our routines. In the chapter entitled, "Principles of Patient and Family Assessment," by Elaine Glass, Douglas Cluxton, and Patrice Rancour, is the sample physical assessment form from Grant Medical Center. It includes palliative assessment areas for documenting patient priority symptoms, their perception of illness, health care goals (cure at all costs, quality of life > length of life, and comfort care), information preferences (truth with details vs. soften truth or tell an identified person), and other things important in health care decision making (what family thinks, what religion says, being in control, cost). Adoption of this simple form in your facility can facilitate palliative care.


Providing Culturally Sensitive Care at the End of Life

All providers should strive for some degree of cultural competence, which starts by being aware of one's own ethnocentrism. In the chapter entitled, "Cultural Consideration in Palliative Care," authors Polly Mazanec and Joan Panke encourage nurses to assess patient and family beliefs about illness and treatment, work with patient and family as teachers and guides regarding cultural practices, and convey respect. Communicating respect may begin with saying, "I am unfamiliar with your culture. Please help me understand why you think you got sick and what you think will make you better." Ask patients and families about their personal preferences and avoid expectations for any individual to represent his or her whole culture. Respect cultural differences regarding personal space and touch and determine needs and desires regarding health-related information: "How much detail do you want to know about your medical condition and to whom do I give it?" The authors also recommend arranging for translation services during discussions about prognosis, treatment options, and decision-making, rather than using a child or family member who may feel uncomfortable speaking about intimate topics or may not understand medical terms in their own language.


Hope — A Delicate Topic

We all recognize our needs for developing our palliative skills in supportive communications with patients and families. Opening discussions about the possibility of the end of one's life is often challenged by health care providers' fear of taking away hope. In chapter 26, "The Meaning of Hope in the Dying," the reader learns how to help patients and families maintain hope even when death is near. The author discusses a broad range of nursing approaches to accomplish this goal, including:
People and families facing life-threatening illness do not invariably lose hope; in fact, hope can increase at the end of life. Nurses can implement evidence-based practices to foster and sustain hope for patients and families at the end of life. Hope is a key factor in coping with and finding meaning in the experience of life-threatening illness. Nurses need to understand and respect individual variations in hope processes to provide sensitive, effective care to patient and their families at the end of life.


Summary

Betty Ferrell and Nessa Coyle have again provided nurses in all care settings with an outstanding resource in their Textbook of Palliative Nursing. Attention to physical pain and suffering as well as existential distress, inclusion of the family as the unit of care, extension of care into bereavement, and interdisciplinary collaboration are the palliative care principles that can help us provide comfort and compassion to patients in our everyday practice. As nursing facilities increasingly become the place of care for patients facing the end-of-life it is our privilege and responsibility to provide the right care — palliative care.

As noted in the foreword by Dame Cicely Saunders, no member of the interdisciplinary team is more central than the nurse to helping patients discover the potential at the end of life — the dimension of being human is the lasting dignity and growth that can continue through weakness and loss. The nurse's individual relationship with patients and families is crucial. The nurse can do much to guide and reframe interventions from "doing everything" to "doing everything to provide comfort and healing."



NOTE: The Textbook of Palliative Nursing, 2nd edition can be ordered from your favorite bookstore and is available at www.amazon.com and www.barnesandnoble.com. (ISBN: 0195175492). Both authors donate their royalties to the Hospice and Palliative Nurses Foundation.




This month's tip was provided by Jan von Lehe, RN, BSN, Associate Director, Group Health Continuing Care Nursing Home Services, Seattle, WA.



References

  1. WHO, 2006; Available at: http://www.who.int/hiv/topics/palliative/care/en/.
  2. Byock I. Dying well: the prospect for growth at the end of life. New York: Riverhead, 1992.