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Caring for those who care for the dying: Coping with the demands on palliative care workers

Published online by Cambridge University Press:  13 April 2006

AMI ROKACH
AMI ROKACH
Affiliation:
The Institute for the Study and Treatment of Psychosocial Stress, Toronto, Ontario, Canada
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Abstract

The article reviews the complex and demanding field of palliative care, noting the sources of the stresses and strains that the health care workers often encounter. It illustrates the multidimensional needs of patients, the reasons why they and/or their families may hamper palliative care, and, mostly, what can be done to deal with and—better yet—prevent palliative workers' burnout.

Keywords

Palliative careHospiceDeathCaregiversSelf-care
Type
REVIEW ARTICLES
Information
Palliative & Supportive Care , Volume 3 , Issue 4 , December 2005 , pp. 325 - 332
Copyright
© 2005 Cambridge University Press

PALLIATIVE CARE

In general, palliative care aims to achieve the best possible quality of life for the dying patients and for their families, to assist them in adjusting to the many losses they endured, and may still face, and to provide them with dignified treatment and lowered distress for the rest of their days (Faull & Woof, 2002; Tang et al., 2004). Van Bommel (1992) eloquently observed that palliative care provides “physical, emotional, spiritual and informational support to help improve the quality of a person's remaining life, and recognizes the patient and family as the principal decision makers” (p. 22).

Palliative care views dying as a normal process, rather than as a medical failure. It neither hastens nor postpones death, while aiming to make the patient as pain free and comfortable as possible. As Cushing (in Faull & Woof, 2002) so aptly observed, “A physician is obligated to consider more than the diseased organ, more even than the whole man—he must view the man in his world” (p. 29). Palliative care, thus, takes a holistic view and integrates the psychological, physical, social, and spiritual aspects of a patient's care. It offers a support system that enables and encourages patients to live as actively as possible until death, and helps the family cope (during the patient's illness) with the bereavement, anticipatory and postmortem (Faull & Woof, 2002).

And, finally, palliative care offers a support system to the patient and to his (often) distressed family. Twycross (2003) maintains that the locus of control in hospice care must be redirected to the dying patient. He goes on to point out that when health restoration is no longer possible, care, and not cure, should be the focus.

Van Bommel (1992) highlighted the different kinds of palliative care that, he suggested, are varied and include five types:

  1. Home care and community hospices: With home care, the patient remains at home until death, rather than in a hospital or nursing home, and is treated by visiting doctors, nurses, therapists, the clergy, and other caregivers. The resources available to the patient and his/her family are usually coordinated and funded by the government and may be coordinated through public health agencies. In situations when families or professional caregivers are unable to provide the care that the patient needs, patients then go to the hospital or to a hospice care facility.
  2. Free-standing hospices: These are the hospice facilities that are separate from any other institution. They provide care for the dying, but do not commonly have operating rooms, specialized life-support systems, or other features of a regular hospital.
  3. Palliative care units in hospitals: These are separate units within the hospital. They provide services and care similar to that in free-standing hospices, except that when needed, hospital personnel and resources are close by.
  4. Palliative care team within a hospital: This is a multidisciplinary team of physicians, nurses, social workers, psychologists, and other caregivers who provide palliative care to the dying regardless of where they are located in the hospital. The team educates the patient's caregiver in pain and symptom control and encourages them to provide the patient with the emotional, spiritual, and informational supports that the patient needs.
  5. Extended care services: These are palliative programs in institutions such as nursing homes and long-term care hospitals.

THE STRESSES, DEMANDS AND COMPLEXITIES OF PALLIATIVE CARE

The Patient

People who are ill and dying may pose particular demands for their carers. The patient may be difficult because of his or her pathology, which may affect her behavior and/or personality, such as brain tumors, cerebrovascular disease, or concurrent illnesses (e.g., hypothyroidism). Pharmacological agents such as oversedation or Tardive Dyskinesia may exacerbate the situation. Psychological factors and psychiatric disorders may result in a patient who is very demanding and difficult to handle; these include anger, mistrust, fear, or shame, which are directed toward the carers, or depression and paranoia, which even in healthy people often disrupt their lives and the lives of those close to them. The patient's symptoms are another thing that contributes to a patient being difficult to care for. Those may include gross disfigurement, malodor, poor response to symptom management, and somatization (Twycross, 2003).

Needs of the Patient

Rokach and Rokach (2005) presented a multidimensional model of patients' needs, including the following:

  • Physical/medical needs: These include pain and symptom management, the need to have a warm and caring environment, and the patients' need to have a sense of control in regard to their treatment.
  • Social needs: Completing unfinished business, the needs to love and to be loved, to forgive or be forgiven, and to sustain trusting and intimate relationships.
  • Emotional/psychological needs: These include maintaining a sense of control, affirmation of one's existence, searching for meaning, and finding the courage to “let go” and bring closure to one's life.
  • Spiritual/religious needs: These include having a sense of hope and inner peace and being able to participate in cultural observances and in prayers.

The above may not constitute an exhaustive list of patients' needs, but it is certainly a daunting one. Ley and Van Bommel (1994) commented that the hospice caregiver may have to become a surrogate family to the patient, for it takes a family to assist in fulfilling so many and diverse needs. Professional carers are the pillars of palliative care, that which was described, so poetically, by Ley and Van Bommel (1994) as “the paving of that final road—whether it be made up of small bright pieces or large solid stones. The mosaic of palliative care provides the support and marks the way for all those of whom we care. You [the carers] are the cement—you are the glue that holds it together” (p. 69).

Entering an environment such as the hospice, which may be “packed” with emotions, patients in pain, demanding family members, trauma, and the constant presence of death, creates anxieties and uncertainties in the newly initiated carers. Harper (1977) suggested that the new carer requires an adjustment period, which may include a time for reflection, feeling, and working through one's reactions. That paradigm is organized into five stages, which may take as much as 2 years to complete. Stage 1, knowledge and anxiety, is the initial period of encountering the dying. The caregiver is concerned but uncomfortable, unable to let the patient speak about dying. Emotional survival, the second stage, is when the carer experiences trauma, guilt, and frustration and through those feelings, starts to confront her own eventual death. The upcoming death is now becoming a reality. Following is the stage of depression, characterized by extreme anxiety, grief, and depression. The caregiver questions his usefulness and capability. Being able to go through this stage, leads to the next one, termed emotional arrival. It is marked by a sense of freedom from the debilitating effects of the pain and grief. Resilience, no doubt, helps the caregiver to recover and grow. The fifth and final stage is deep compassion, which is characterized by self-realization and self-awareness and is the combination of all the growth that has been achieved. The carer can now serve the dying with compassion, deep caring, professional knowledge, and comfort in the presence of the patient.

WHY WORK WITH THE DYING?

So, if palliative care is so demanding, what then draws people to work with the dying? Mason (2002) suggested several such reasons:

  1. “Outsiders”: Interestingly, many palliative carers may feel like outsiders, people who do not feel (prior to working with the dying) that they are an integral part of society, and thus feel stigmatized and different—very much like the dying, who are kept “hidden” from the rest of society, and their illnesses, by definition, make them different, and they are often times ostracized and stigmatized by the rest of society (see also Rokach, 2004). Connecting with patients on that level makes it easier for the palliative caregiver to work with a segment of the population that may mirror their plight.
  2. Using of the self has been observed to be shared by many who work with the dying. Here, just as in the “outsiders” category, the dying may mirror the palliative care worker's psychological state, or in some other manner help resolve internal conflicts or deficits and to assist in a better understanding of patients. For example, they may find a way of using their experiences of, say, depression or rage to enhance their understanding of the despair that people may experience close to the end of their lives. Others may need to delve into their past in order to revisit traumatic events and resolve “unfinished business.” That need allows the palliative caregivers to better understand the dying, who, often, repeatedly engage in the very same behavior. Another example of use of the self is a palliative worker who may have wanted, as a child, to connect to inattentive adults who may not have, at the time, paid attention to her. In working with the dying, she now has an audience who is almost always attentive and eager to interact.
  3. The “wounded healer” is the next category, so named after Chiron (see Kearney, 1996). There is an old myth about Chiron, who was born a centaur, with a human head and torso and the body of a horse. Because of his parentage he was half mortal and half immortal. One day while Chiron was attending a feast, he was accidentally hit and seriously wounded in his knee by a poisoned arrow. Being half immortal he did not die, but was left with an agonizing wound. He withdrew to a mountain retreat, searching for relief from his suffering. Although he was unable to cure himself, he discovered many healing remedies for others. His ability to heal others was a direct result of his own journey in search of healing his wounded self. Similarly, many of those who dedicated their lives to caring for others, palliative carers included, have a history of illness, pain, losses, trauma, or despair. Attending to the pain of their patients helps the carers assuage their own pain and get closer to healing.

It is important to note that many of those who help others do so because they genuinely care. They have deep compassion for the suffering of the dying and want to contribute in easing their pain.

DEMANDS OF PALLIATIVE WORK

Aside from attending to the patients' physical, medical, emotional, and spiritual needs, the palliative carers are, frequently, faced with difficult patients and demanding or even unruly families, and they may also experience high levels of stress in dealing with their professional requirements. These include:

  • Breaking bad news about the patient's diagnosis and/or prognosis
  • Coping with medicine's inability to offer these people a cure
  • Repeated exposure to the death of their patients with whom they may have formed relationships
  • Involvement in emotional conflicts with the patients, their families/caregivers, or with other members of the palliative team
  • Absorption of the anger, grief, and despair expressed by the patients and their families
  • Members of multiprofessional palliative workers may have to deal with role blurring, where, for example, the patient complains to the attending physician about his food and to the social worker about his pain and physical discomfort
  • Challenges to one's personal belief system about the medical network, teamwork, death, and dying.
  • Living with uncertainty and mystery. Although the palliative carers are taught palliative care theories, life does not usually follow those theories. People are unique and their experiences, pain, struggles and death often defy theories, orderliness, and logic.

The above may be a comprehensive but by no means an exhaustive list of the stress-producing demands that the palliative caregiver faces (Twycross, 2003).

Belsky (1999) noted that palliative work and caring for the dying was originally structured in a clear fashion based on the course that the patient's illness was predicted to take, based on the patient's diagnosis and physical state at admission. This “dying schedule” governed how the hospital staff acted and the treatment that was offered to the patient. However, uncertainty is frequently present due to individual differences and changing circumstances of patients, and thus “expected swift death” could turn into “lingering while dying” or even “expected to recover.” Conversely, “expected to recover” might become “expected swift death” if the individual takes a turn for the worse (Belsky, 1999, p. 379). People are unique, and their experiences, pain, struggles, and death often defy theories, orderliness, and logic. Professional carers are taught palliative care theories—and then they have to deal with “real-life” situations, which, as illustrated above, may be quite different (see also Parkes, 1997). Open caregiver–patient communication is, therefore, of utmost importance. However, in some circumstances it may not be possible because the patient is too ill, is unconscious or is actually dying, does not share a common language or culture with the carer, or is simply not interested in communicating with the caregiver. That may be as stressful as other situations in which the patient is communicative, but is oppositional, belligerent, withdrawn, or uncooperative (Faull & Woof, 2002).

Remen (1996) eloquently noted that, “the expectation that we can be immersed in suffering and loss daily and not be touched by it is as unrealistic as expecting to be able to walk through water without getting wet (p. 52). It is important, then, to understand how exposure to all the stresses and strains of palliative work affects those who practice it.

THE EFFECTS OF PALLIATIVE WORK

Describing the hospice, Epstein (2004) observed that, “this land carries the stagnant malodor of decay, both corporal and psychic … each encounterance here shows only the dying embers of life in his eyes, those windows to the interior of a man's heart. Look here; his body is bruised and cachectic, glowing an otherworldly, pallid blue in the moonlight above. He is nothing save a broken bag of bones” (p. 84).

Working and caring for the dying exacts a toll not only from close family members and loved ones, but from palliative caregivers who look after the patient, may get attached to him or her, may feel helpless seeing that “a good death” was just a romanticized view, and that most deaths come through pain and suffering. That may result in physical and emotional exhaustion, leading to burnout (Robbins, 1998). Burnout may be expressed as hostility, anger, withdrawal, or negative self-concept (Koff, 1980).

ROLES OF PALLIATIVE WORKERS

Hunt (1991) studied the conversations that took place between the palliative staff, the dying patients, and their families. He pointed out that palliative staff fulfills four major roles:

  1. The bureaucratic role: the means and rules of the institution through which the staff's work was delivered.
  2. The biomedical role: focusing on the illness, assessment of symptoms, pain relief, and treatment of physical symptoms.
  3. The social-therapy role: meeting the patient's emotional, social, and material needs.
  4. The friendly, informal role: making efforts to temper the formalities of hospitals; the feeling, experiencing, and sharing with the dying.

I mentioned previously that the palliative carers, not unlike others in the helping professions, are wounded healers—choosing their profession as a way of healing. However, regardless of how, or why, people choose to be palliative workers, they may experience wounds that arise from their professional practice.

Ley and Van Bommel (1994) highlighted the diversity of carers. “We, the caregivers come from different backgrounds, from different beliefs, from different religions or no religion at all, and we are not dying. It is said that no one can imagine their own death. This means that when we care for dying people we cannot imagine what they are experiencing. However, we too can feel suffering. We can feel pain. We can feel loss” (p. 54).

One of the most common experiences is that of loss and disappointment, which are the result of death of the patient, a patient that one may have felt connected to, cared for, and invested in supporting (Parkes, 1997). What is even more damaging is that palliative caregivers rarely fully (or sometimes not at all) grieve that loss. Over time those distressing and ungrieved losses may be too heavy a burden to carry, and burnout and inability to deal with further losses may result, only to be compounded by anxiety, anger, depression, loneliness, and health problems (Chentsova-Dutton et al., 2002).

Whereas physicians, nurses, and other professional carers look after ill people whose condition generally improves, hospice workers are “constantly in the presence of intense emotion, sadness, and impending death without the ‘dilution’ of patients who become cured, or patients with whom it is possible to build up relationships over long periods” (Robbins, 1998, p. 83). Consequently, and in order to be available to help the dying and capable of investing themselves physically and emotionally in their work, palliative carers have an “onus” as Ley and Van Bommel (1994) put it, to examine their beliefs, feelings, and attitudes about death, the meaning of life, and grief, to care for themselves, and to supplement their work so as to enrich themselves and reduce the possibility of burnout.

CARING FOR THE CARERS

Like every other person, regardless of one's age, gender, profession, or life stage, palliative workers can succumb to the constant and unrelenting stresses and demands of their professional (on top of their personal) lives. Self-care, professional rejuvenation, and social support are of prime importance, not only as a response to burnout, but, better yet, as a way of preventing it.

Reflective versus Dogmatic Practice

The dogmatic manner of practicing health care occurs in the context of a bureaucracy that has its own structure, goals, and tradition. Health care workers and especially physicians are vested with authority that implies that their style of communicating with and relating to the patient is professional centered and that the training that they had to undergo “trained out [of them] the personal and emotional response to the suffering they [are] witnessing” (Mason, 2002, p. 18). Some health care professionals “turn off” to matters that they cannot control or handle, and use denial (that they feel inadequate) as a coping strategy (Metcalfe, 1983).

Kirklin and Richardson (2001), reflecting on Hippocrates' conception of medicine as an art, contributed to what came to be known as reflective practice—an opportunity for the health care professional to examine his/her thoughts, feelings, and life experiences that impact on their therapeutic practice and to gain insight into their strengths and weaknesses as expressed through their work (Schon, 1987). Reflective practice advocated that one of the most important aspects of healing (and not necessarily cure) is the relationship that exists between the healer and the one who wishes to be healed (Beecher, 1961; Skipper & Leonard, 1968).

Central to the idea of reflective practice is consideration and respect for the unique person, which the practitioner is. The health professional is seen as central to the work of healing. As Yalom (1980) noted, “the effective therapist cannot remain detached, passive and hidden” (p. 411) while carrying out his duties. Reflective practice and the use of self involves the development of wisdom. Wisdom can be defined as theories and models of care blended with a rich and varied life experience, self-awareness, technical expertise, and ethical judgment against a backdrop of one's understanding of his/her competence and limitations (Wosket, 1999).

Awareness is essential for reflective practice, as it can help the practitioner to understand and identify stresses and strains that she is facing and address them, so as to decrease their interference with the care she is offering. Awareness allows the practitioners to recognize that their own psychological processes may, at times, be a liability, but under different circumstances could be an asset. Self–awareness may be the hardest journey one may need to take—but reflecting deeply and on an ongoing basis on their psychological characteristics, personal experiences, and professional activities will often result in personal growth and improved (and more genuine) care of the patient.

Helping and caring for the dying and attending to most, if not all, of the patient's needs is of paramount importance and benefit to the client. However, as Rogers (1961) once remarked, real service can happen only if both the carer and the one who is being cared for are being served. Thus, Mason (2002) outlined several ways of serving the patients and doing so by bringing the self of the practitioner into the process:

  • Listening: One of the fundamental and most powerful element of interpersonal communication is listening. Mason (2002) maintained that listening is the oldest and possibly a very powerful tool of healing. Listening fully, deeply, and empathically to patients and their families could not only have, at times, a profound effect on them, but it could contribute to the professional's development of wholeness.
  • Sharing our humanity: Remen (1996) observed that “In some basic way it is our imperfections and even our pain that draws others close to us” (p. 113). That has been my experience as well—as a psychologist. Professional carers achieve knowledge, develop expertise in various spheres of work, and may be well versed in the theory and practice of their chosen field. However, it appears that in the “healing world,” carers will not be readily trusted by patients—with their vulnerabilities, insecurities, and fears—unless they can see that the carer is a human being just like them with their own vulnerabilities and “blemishes.” Rogers (1961) is said to have taken time before each session in order to remind himself that he is a fallible human being just like those who sought his help (see Mason 2002).
  • Living with uncertainty: People, in their very nature, desire order and coherence, so they can fit what they experience into the category of the known, and theories address that need. However, if carers can resist those desires, and view theories as just provisional explanations of the world, they will be able to deal more ably and appropriately with the patient's reality, his unique experiences, fears, and struggles. Allowing the uniqueness, strangeness, and newness of each person to complement the knowledge, theories, and models that the carers were taught will introduce uncertainty, mystery, and maybe even some anxiety into their professional world—but it will also make them much more sensitive and in tune with their patients' and their own inner experiences, emotions, and needs.
  • The power of love: The traditional approach that health workers are taught is that (a) they need to be “objective” when they treat patients, and (b) objectivity means distance and uninvolvement. This approach is attributed to Sir William Osler (1892), which Remen (1996) suggested did not mean it at all. She contends that, having used the word aequanimatas, he did not mean distance and uninvolvement, but rather that health care workers need to attain inner peace and calmness of mind when attending to their patients. Mason (2002) suggested that “engagement and involvement are the aspects of relationship that are important in healing. I would even venture further and suggest that love plays a significant part in healing” (p. 27). Here, Mason refers to Rogers' (1967) unconditional positive regard, which is aimed at bringing about growth and fulfillment in the patient who is being attended to. This is a strengthening love, a love that does not demand from or obligate the loved one (Kahn, 1997). Holeson (1985) equates that kind of love with tenderness, whereas Wosket (1999) sees it as non-self-centred love that is unconditionally dedicated to the growth and development of the one being loved. Love, as is commonly known, has immense power to help heal (the soul, if not one's body), soothe, and promote inner peace and calmness, so very needed at the edge of life.
  • The power of stories: Loneliness and isolation are an existential fact, which has been present in human life since the beginning of time. We all yearn to transcend that which separates us from each other (Moustakas, 1961). We are each unique, with our own “life story.” By allowing patients to share their stories, and contributing their own experiences, palliative workers can facilitate mutual learning of the similarities and what connects them to the patients, or as Mason (2002) so aptly put it, “Listening to the stories of the clients with whom I work, I discover the heroism of ordinary people living ordinary lives” (p. 28).

Oliviere (2002) advanced the idea of the “dot theory,” which stipulates that our lives are made up of what appears to be a random series of dots, with the pattern of the dots becoming obvious only upon looking back on them. It is only when we review and reflect on them that we can see their meaning and contribution to our growth. Dying people are known to review their lives and attempt to “connect the dots”. However, many of their stories and experiences can shed light and intensify their connectedness to the professionals who have their own stories of lived trauma, crisis, anxiety, and failures with which they themselves have struggled. Reflective practice is, thus, a more humane caring, one that is supportive and involved, to a much larger extent, than the dogmatic approach. It is both more demanding of the health care worker and so rewarding and fulfilling.

Jackson (1990) observed that “the complex demands of palliative care cannot be adequately met though the isolated striving of individual health care workers” (p. 14). Manning (1985) suggested that the heart of hospice care is teamwork. However, it should be noted that a team is not a heterogeneous group of people put together, but rather a cohesive entity supportive of its members. The key to a successful team is the team leader, who can bring each team member to understand her unique contribution to the common goal, making that member want to be part of the team and work in harmony with the other members. A good team, a la Jackson (1990), “is egalitarian, avoids cliques, is inclusive of its members, is welcoming to new members, and fosters feelings of belonging” (p. 16). A team is not a static body, but a dynamic and changing entity. Thus it needs to be maintained, members' commitment reinforced, and the direction, purpose, and the team's philosophy reiterated and revisited.

Each member of the team can, and should, care for herself and her needs on an individual basis. The self-care process needs to attend to, both the personal and professional domains:

1. Understanding our strengths and weaknesses. This can be done alone or through personal therapy and feedback from our friends, family, and loved ones. Knowing where our shortcomings and strengths lie, we can plan what we do and how we live our lives, what emotional/physical/spiritual “work” we still need to undertake, and how can we use our strengths to compensate for our weaknesses.

2. Spiritual time, that time that we spend in solitude, recharging our physical and spiritual energy is fundamentally important. Spiritual time may be spent hiking, biking, reflecting, meditating, or praying. Learning to appreciate the beauty of life and counting our blessings will help us face the pain and losses that life so often entails.

3. Listening to our inner voice, our intuition, being aware of our needs and wishes will allow us to recharge, to do (or stop doing) what is too demanding (or missing) in our lives, and will promote self-renewal and guard against burnout.

4. Allowing ourselves not to be defined by our work. That will give ourselves permission to “take a break” from attending to the dying and their families, stop grieving for a while, and “be” rather than “do.”

5. In an attempt to prevent “stretching” ourselves over our limits, we need to set (or acquire) effective time management skills, set limits and boundaries, and remember that we are not perfect nor should we expect ourselves to behave as if we were.

6. Death should be part of our lives, especially that of palliative carers, but it should not be the whole of it. Thus, we deserve and need to allow ourselves to lead a whole, rich, and joyful life (see Robbins, 1998; Faull & Woof, 2002; Oliviere, 2002; Twycross, 2003).

Brems (2000) added to the above the following:

7. Practicing healthy personal habits such as adhering to healthy nutrition, getting restful sleep, engaging in healthful physical activity, and taking time to commune with nature.

8. Paying close and continuous attention to our relationships with those who support us. This may include practicing empathy, tolerance, and respectfulness, accepting of others' point of view without being defensive, and developing and enhancing our social support network—our families, friends, and intimate relationships.

9. Engaging in recreational, non–work-related activities, which allow us to destress, and do something that we like, enjoy, and choose to engage in. Some such activities are entertainment, travel, hobbies, and volunteer work.

10. Relaxation and centeredness: Getting in touch with ourselves and our inner voice (see also 3 above) can be facilitated by relaxation, guided imagery, and meditation.

11. Self-exploration and awareness, so that we get acquainted with our strengths and weakness (see also 1 above), can be achieved via personal therapy, dream work, journalizing, and reading.

As important as practicing personal self-care, palliative workers must also engage in professional development. Brems suggest that it can be achieved by:

12. Attending continuing education opportunities such as attending conferences and workshops, reading books and journals, and participating in classes and lectures—as the audience or the presenters—for in both roles we end up learning and evolving, either by being offered that information in classes we attend or preparing for presentations by acquiring the knowledge we mean to disperse.

13. Getting support via networking, supervision, and connecting with colleagues, allow debriefing, which provides the worker with honest, though sensitive, feedback about their caring skills and practices, and getting a mentor from whom we can learn, derive strength, and even emulate.

In this article I have attempted to raise awareness of the dire need for palliative workers to engage in those behaviors throughout their work with the dying and suffering, not only as a way of preventing burnout but as a means of promoting what Koff (1980) described as the most desired stage in professional growth: deep compassion, where the “worker has the willingness and capacity to serve the dying, coupled with a feeling of his own worth that communicates comfort and respect to the dying person” (p. 106).

ACKNOWLEDGMENTS

I extend my thanks to Raan Matalon, Ben Rokach, and Zainab Baig for their help in preparing the manuscript.

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