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

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.