36

Counselling and psychotherapy in palliative/hospice

care: a review
Mary LS Vachon Department of Social and Community Psychiatry, Clarke Institute of Psychiatry and Departments of Psychiatry
and Behavioural Science, University of Toronto

Key words: attitude to death, counselling, evaluation studies, hospices, palliative treatment,
psychotherapy
A basic tenet of hospice/palliative care is the provision of emotional support for the
patient/family unit. However, little systematic data is available to document the
counselling and psychotherapy which is provided within hospice and palliative care
settings. This paper reviews the emotional needs of cancer patients and family
members, the psychiatric symptoms which result from unmet needs as well as the
response to dying, provides an overview of models of intervention and reviews
studies of the effectiveness of hospice intervention. Serious deficiencies are found
in the data available to document the counselling and psychotherapy which occurs
in hospice programmes and to measure the effectiveness of these interventions.
Suggestions for research and future programme development are given.

Introduction must be provided to the family and the patient

Fundamental to the concept of hospice/palliative
care is the tenet that hospice will recognize and
provide for the psychological and social needs of
patients and their families and that this care will
continue into the bereavement process.’ In the
United States, under Medicare Reimbursement,
in order to provide such care it is required that a
hospice must have at least one interdisciplinary
hospice team that includes a doctor, a registered
nurse, a social worker, a dietician and a pastoral or
other counselor. Spiritual and other counselling
Address for correspondence: Dr MLS Vachon, Clarke Institute
of Psychiatry, 250 College St, Toronto, Canada M5T 1R8.
directly by the hospice team and bereavement
counselling, supervised by a nurse, must be
available to the family after the death, but these
services will not be reimbursed. Such services are
often available for up to one year after bereave-
ment. More often than not, however, informal ser-
vices are provided. In addition, under Medicare
certification, the hospice must conduct ongoing,
comprehensive and integrated selfassessment of
the quality and appropriateness of patient carve.2
While most other countries do not have the com-
ponents of hospice spelled out in legislation, most
hospice programmes are committed to providing
services which bear at least some semblance to the
above criteria, albeit that many programmes

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would have difficulty in attaining all of the objec-
tives listed above. All hospice programmes would
agree, however, that despite limited resources,
hospice has a commitment to provide emotional
support for the terminally ill and their families.
Nonetheless, despite the commitment to
emotional support and the requirements of evalu-
ation to which some programmes are committed, it
is difficult to obtain information about exactly how
such services are carried out in specific hospice
programmes and to measure the impact that hos-
pice is having on the emotional and psychological
needs and quality of life of dying patients and their
families both during the dying process and into the
bereavement period.
In order to clarify these issues and to present an
overview of psychosocial intervention in palliative
care, this paper will draw on descriptive studies
and empirical data, to review the emotional needs
and problems of patients and family members liv-
ing with a terminal illness; the symptoms of emo-
tional distress and psychiatric disturbance found in
this population; models of intervention in hospice
care; and the efficacy of hospice intervention in al-
leviating or decreasing the distress experienced by
this population. Finally, suggestions will be made
with regard to future programme development and
research which needs to be done in the area. In this
paper, the spiritual needs of the dying and their
family members will not be discussed as a compo-
nent of emotional needs. The reader who is in-
terested in pursuing this subject in more detail is
referred to the important work recently edited by
Florence Wald.33
The extent of the problem
The emotional needs of hospice patients and
families
Before discussing counselling and psycho-
therapy in palliative care, there must be documen-
tation as to the actual emotional needs of dying
persons and their family members. Such informa-
tion is essential in order effectively to plan and
evaluate hospice services. In addition, it may well
be that failure to meet such needs may lead to an
increase in, or even cause, psychiatric symptoms
such as anxiety and depression. If it can be shown
that hospice patients and their family members
have fewer psychiatric symptoms and report more
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37
of their emotional needs as having been met, then
some proof as to the efficacy of hospice services
will have been shown.
The emotional needs of palliative care patients
and their families have been assessed using a
variety of approaches including: asking the patient
and/or family member directly about personal
needs;4--l&dquo; asking the patient about family needs;4
asking the family about patient needs;4,5.9 asking
professional caregivers about the needs of patients
or families;&dquo; and/or trying to measure differences
between and amongst various groups with respect
to patient and family needs. 5.12 Such studies may
include data gathered at one point in time;6.?,9 be
cross sectional4 or longitudinal8,10,12,13 or retro-
spective 4,14 and may involve interviews,6,8,9 ques-
tionnaires,’2 chart reviews’ 1,15-17 or a mixture of in-
terviews and chart reviews. 18 Not surprisingly,
most of the studies involving individual interviews
have small samples,6-9.18 although there are some
noteworthy exceptions involving large scale
studies. 5.10 Studies involving chart reviews, which
may be limited by what is actually recorded in the
chart, generally have larger samples. 11,17
Patient needs
Because there is insufficient data from hospice
studies to document the emotional needs or
problems of patients and families with advanced
cancer, this section will also include data on the
needs of those with advanced cancer who are being
treated in settings other than hospice.
Grobe et a1.4 4 did a needs assessment prior to the
development of a hospice programme. They
studied the needs of 30 advanced cancer patients
and 28 of their family members, as well as 29
bereaved family members. The authors found
that 30% of the patients and 25% of their
relatives said they wanted emotional sup-
port. However, of those who had already experi-
enced a death, 55% wished emotional support had
been available during the time of the final illness.
This finding raises questions about the retrospec-
tive satisfaction of family members with the
adequacy of the care they perceive their relative as
having received.
Byrne’8 carried out a community assessment to
document the need for a hospice. Although the
sample studied was small (N 38), it included
=
both clients and providers, a review of records, ser-
vice agencies and key informants. She found that
38
almost half (48%) of the problems associated with
terminal illness were felt to be due to the patient’s
reaction to the illness and impending death. When
asked to rate the major problems faced by those
with a terminal illness, 46% mentioned pain, 27%
accepting illness, 24% accepting death, 24% poor
communication with family and 19% a loss of con-
trol or independence.
The issue of patients’ acceptance of death has
been studied by Hinton, 19 who found that 26% of
dying patients had untroubled acceptance of
death, while 53% had some concern and 21 % were
troubled by thoughts of dying. Vachon2° found
that half of patients in psychotherapy at the time
that they were dying had difficulty in believing that
death was really imminent. In that study many
patients, who might have been thought to have
been using denial, did indeed live longer than was
expected.
A recent well-designed needs study by Houts
and his colleagues5 of 629 persons with cancer diag-
nosed within the last two years in Pennsylvania
found that those persons with a history of emo-
tional problems prior to their cancer and an ad-
vanced stage of cancer at diagnosis were more
likely to report emotional/social unmet needs, un-
met needs in relation to medical staff and a larger
number of unmet needs than were patients with
less disease at the time of diagnosis. These authors
found that unmet social and emotional needs were
the most common unmet need of patients and oc-
curred in 25% of their total group.
Garland, Bass and Otto’2 obtained a ranking of
the needs of hospice patients by relatives and
primary caregivers before and after death. They
found that both groups rated the most important
need of the hospice patient as being to have his/her
wishes respected, in accordance with the hospice
philosophy of death with dignity and in control.
Family needs
Grobe et al.4 found that emotional support for
the family was wanted by 17% of dying patients,
46% of their families and 52% of the bereaved re-
latives. Of the latter group, 35% wanted bereave-
ment care.
Haysls compared two groups of patients on the
Connecticut Hospice Home Care Program with re-
gard to the symptoms of those who were and were
not hospitalized. She found that the hospitalized
patients had more individual symptoms (pain,
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nausea/vomiting, elimination problems, respir-
atory deficit, nutritional status deficit and mental
status deficit) as well as more combinations of
symptoms. Probably in response to the large
number of symptoms, especially pain, their
families exhibited more anxiety and fatigue. The
author suggested the generous use of ancillary ser-
vices, especially with older caregivers, to prevent
fatigue.
Other studies of the problems experienced by
family members caring for persons with advanced
cancer have shown that half of families experi-
enced stress in the caregiver role and close to one-
quarter perceived patient suffering as a source of
discomfort to them; they also had difficulty with
uncertainty about the disease course as well as feel-
ings about their inability to provide care and han-
dle the patient’s depression and anger.~ Looking
specifically at the needs of the family members of
dying persons, Hampe~ identified eight needs: (1)
to be with the dying person; (2) to be helpful to the
dying person; (3) to receive assurance of the dying
person’s comfort; (4) to be informed of the dying
person’s condition; (5) to be informed of impend-
ing death; (6) to ventilate emotions; (7) comfort
and support from family members; and (8) accep-
tance, support and comfort from health care pro-
fessionals. Only three needs were described as
being met for more than half of the sample: the
need to be with the dying person (63%); the need
to be helpful to the dying person (74%); and the
need to be informed of the impending death
(74%).
In the chart review of homebound cancer pa-
tients done by Wellisch et al. 17 it was found that the
families of older male patients with lung cancer felt
more overwhelmed and depressed than other
families and that the families of young women with
cancer of the cervix were more apt to have inter-
personal frictions and difficulties in role shifts
mandated by the illness. They suggested that older
family members might feel overwhelmed with the
home care situation and feel guilty and depressed,
which led to an inability to muster strength to cope
with home care, leading to further depression. It
was suggested that home care services to decrease
isolation and increase a sense of support might be
the most appropriate intervention for the older
family, while the younger family might need less
home care and might not have the same sense of
isolation and depression, therefore they might best
 39

be helped with ventilation and more traditional grief from earlier loss experiences.
mental health services in their home. The most commonly reported psychological
Reviewing patients and families in a hospice set- symptoms in hospice patients and family members
are anxiety and depression. Prevalence estimates
ting who were referred to a psychiatrist,
Stedeford 21 found that poor communication in of psychological distress amongst the general
couples caused more problems than any other dif- cancer population, including patients along the

ficulty with the exception of pain. She found that continuum from ambulatory care to hospitaliza-
families needed help either with the fact that the tion, is 47% with 10-15% experiencing a major de-
patient was withdrawing or else that the patient pression which is more common amongst those
was wanting constant contact. who were physically ill.23 Amongst the geriatric
Another much larger study by Petrosino&dquo; in- cancer population, it is estimated that as many as
volved a survey of 350 hospice records by nurses in half will experience significant depressive
41 states. She also found that pain was the major symptoms. 22
problem experienced by hospice patients (37%). There are few studies which give percentages of
However, family emotional problems were listed terminally ill and/or hospice patients who have
as one of the top four problems in 24% of the re- psychiatric symptoms and of these some authors
cords reviewed. Petrosino hypothesized that emo- use clinical judgement and others use valid and re-
tional problems might not be that highly rated by liable instruments. Hinton’9 found that 56% of
nurses because they might see these as being the terminally ill patients had some unhappiness and
area of concern for other professionals. Alterna- anxiety, but he noted that many were not
tively, she suggests that perhaps the psychological distressed. He found that 39% of those he studied
problems of hospice patients and their families were sad and 6% were clinically depressed; 54%
may be less than has been assumed. were anxious and 3% were agitated. Mor 24 re-

ported that in the large National Hospice Study,

there was a virtually unchangeable level of
Psychosocial/psychiatric symptoms depression over the first seven interviews which
ranged from 21.4%-22.6% of the sample. There
Stedeford 21 has stated that almost the whole range was also an unchanged level of low self esteem
of psychiatric syndromes may be encountered in which ranged from 10.3%-11.1%.
dying patients. These may be directly related to the Lack and Buckinghamz5 also compared hospice
terminal illness, either because of the maladaptive and nonhospice patients and family members using
use of psychological defence mechanisms or be- the SCL 90. They found that 12 out of 39 hospice
cause they may be symptomatic of an organic brain patients had a score of three or more on the five-
syndrome, or there may be a combination of the point scale and 4 out of 39 had a score of three or
two. This paper will not deal with organic or toxic more on the anxiety subscale. Cassileth et al.26

problems, other than to note that they should be found cancer patients receiving palliative treat-
ruled out before undertaking counselling or ment, most of whom were not in a hospice-type
psychotherapy. Information on the differential programme, were significantly more anxious than
diagnosis and treatment of confusional states can patients at other stages of the disease process.
be found in other papers.2’.22 Stedeford suggests Vachon2° reviewed the charts of 119 cancer
that dying may precipitate people into psychiatric patients referred for psychotherapy, two-thirds of
illness if they have undue vulnerability as a result whom had recurrent, advanced or terminal disease
of previous unresolved separation and loss experi- at the time of referral and half of the sample had
ences ; a lack of support from at least one loved died of their disease. In this group, diagnosis was
person; and they have been made aware of their made based on DSM III criteria .27 Forty-three
condition at a rate which was not appropriate for percent had a diagnosis of situational adjustment
the individual, such that the natural process of ad- disorder/mixed anxiety and depression; 38% situ-
justment and assimilation could not take place. ational adjustment disorder/depression; 5% major
Vachonz° has also noted unresolved losses in a depression; 5% situational adjustment disorder/
large number of cancer patients referred for anxiety; 8% borderline personality and 2% other.
psychotherapy: 59% of her sample had unresolved Stedeford and Bloch 28 studied a smaller group of

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40
49 hospice couples and found that half of patients
had depression or anxiety associated with unsatis-
factory communication regarding illness or treat-
ment ; failure to adjust lifestyle to changing
circumstances and preexisting family or marital
problems.
Looking at the issue of suicidal thoughts in
cancer patients, Brown, Henteleff et al. 29 reviewed
the literature on cancer and suicide and found that
in Achte and Vauhkonen’s3° study of 100 cancer
patients, none expressed suicidal thoughts al-
though one later committed suicide. Using the Fin-
nish Cancer Registry, Luohivuori and Hakama 31
found that the suicide rate was 1.3 times higher
among male cancer patients and 1.9 times higher in
female cancer patients than in the general popu-
lation. In an eight-year retrospective study of
suicides among patients in Veterans’ Adminis-
tration Hospitals, Faberow et al. 32 found that 23%
of 171 patients who committed suicide had cancer.
In an earlier study Faberow et ail. 33 found that those
cancer patients who committed suicide had fewer
psychosocial resources and showed poorer adjust-
ment.
The author is unaware of any studies of com-
pleted suicides amongst patients and family mem-
bers in hospice, but anecdotal evidence indicates
that these do occur. Brown, Henteleff et al.29
studied suicidal ideation amongst 44 patients in a
palliative care unit. They found that 11 out of these
44 patients had severe depression and 10 had de-
sired early death. Three of these patients were or
had been suicidal. These authors used the short
form of the Beck Inventory to measure depression.
This form of the instrument does not include in-
somnia and weight loss. Patients in that study were
rated as being depressed if they met the DSM III
criteria for a major depression or had a Beck Short
Form score of 15 or more. In Vachon’s study20 46%
of those referred for psychotherapy had a history
of previous psychiatric difficulty, usually
depression, which was usually not known by the re-
ferring oncologist, and 11% responded to the
threat of death with suicidal ideation. In that study
there was one possible suicide.
Several authors make the important point that
suicidal ideation in and of itself does not justify a
diagnosis of depression.2122.3&dquo; Stedeford21 notes
that ideas of suicide may not be so much a sign of
depression as of wanting to retain control of one’s
life to the end and of wanting to shorten the period
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of dying and thus to relieve others of the burden of
caring for them. She suggests that consistent low
self esteem and morbid guilt in the seriously ill are
the two most reliable indicators of depression and
when these are present there is often a good re-
sponse to antidepressants.
Much of the difficulty in adequately document-
ing the problem of depression in hospice patients is
the fact that, according to the Dahlem Conference
on the Origins of Depression,34 there is no agree-
ment currently on how to classify patients with de-
pression associated with physical illness and on
how to calculate prevalence and incidence rates of
depression in these groups. Many of the vegetative
symptoms associated with depression such as
anorexia, weight loss, insomnia, reduced energy
and reduced concentration are features of chronic
debilitating disease, including malignant
cachexia.29 In addition, terminally ill patients can-
not be subjected to the usual psychiatric assess-
ment which might take one to two hours. They can
seldom be interviewed for more than 20 minutes
and often for no more than five minutes. 29 It thus
makes it difficult for hospice providers to know
whether or not they are improving a problem such
as depression when it is so difficult reliably to as-
certain whether or not the problem exists.
Goldberg and Cullan22 state that given the diffi-
culty in assessing depression using vegetative
symptoms, some clinicians prefer to rely most
heavily on psychological symptoms as the prime in-
dicators of depression in the seriously ill. They
suggest that additional indicators of depression
may include chronic pain, unresponsive to
traditional therapy, physical disability out of pro-
portion to physiologic impairment, failure to en-
gage in a rehabilitative measure, somatic preoccu-
pations and the wish to discontinue treatment.
These authors caution that pain must always be ad-
dressed as the potential primary problem in
patients with depressive symptoms. The presence
of chronic pain in and of itself may be sufficient to
produce depression. They also note that it may be
difficult to distinguish the giving up and with-
drawal that many consider to be the final stage of a
terminal illness from the picture of pathological
depression. Attempts must therefore be made to
do an appropriate differential diagnosis for the
source of depression before treating it with coun-
selling or psychotherapy.
Patients are not the only ones to experience

anxiety and depression in response to the terminal
illness. Cassileth and her colleagues26 found that
the emotional state of patients and their matched
next of kin were correlated for state anxiety, mood
and mental health. In addition, Lack and
Buckinghamzs found that primary care persons
were in general more hostile, depressed and
anxious than were dying patients in both their hos-
pice and nonhospice samples. Studying spouses of
dying persons, Howe117 found that more than half
had disturbed thought processes, such as repeated
unpleasant thoughts, difficulty in making
decisions, difficulty remembering and difficulty in
concentrating. All family members reported at
least emotional response to their current situ-
one
most common in both men and
ation, anxiety was
women with depression, emptiness and fear also
being common.’7
Models of intervention in hospice care
Given the emotional needs and psychiatric
symptoms of hospice patients and their family
members, a number of approaches to providing
emotional and psychological support services and
intervention have been suggested in palliative
care, but no one model has been researched and
found to provide the best type of service. Most of
the support being offered by hospice is in the form
of general social support .35 Christ36 has proposed a
model of intervention for various points through-
out the course of cancer, organizing services
around the nodal points at which patients experi-
ence special stressors. She suggests specific
psychosocial interventions aimed at helping
patients and families to complete predictable,
practical, social and emotional tasks. These inter-
ventions include: resource provision, education,
cognitive skills training including behavioural
techniques, crisis intervention, supportive inter-
ventions and insight-oriented interventions. De-
pending on the time frame available, any or all of
these approaches could be used in the hospice situ-
ation.
Resource provision for emotional and social
needs might well include obtaining home care
help,&dquo; relief hospitalization, medication2’ or other
interventions that might decrease the stress experi-
enced by the specific family. Education might in-
clude helping the family members to learn ways in
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41
which they might care for the patient, thus decreas-
ing their uncertainty in this stressful situation. An
overview of the behavioural approaches which
might be used with terminally ill persons has been
done by Sobel. 37
Christensen and Harding38 reviewed the concept
of crisis intervention and based on the work of
Puryear39 made suggestions for using this as a use-
ful model in hospice intervention. The concepts of
self care and personal control are basic assump-
tions of both the crisis intervention model as well
as of the hospice philosophy. Christensen and
Harding suggest this model for nursing care, al-
though it could certainly be used for other pro-
fessional groups who might be attempting to al-
leviate psychosocial distress in hospice patients as
well. In using the crisis intervention model, one
needs to be perceptive enough to recognize the
need for strong guidance when a full scale crisis
exists and be flexible enough to pull back when the
problems are resolved.
The principles basic to crisis intervention in-
clude : immediate intervention because patients and
families are in a crisis situation. They need help im-
mediately and may well be more motivated to
learn at this point. Action: people in crisis are over-
whelmed, immobilized and unable to function ef-
fectively. Intervention at this point is focused on
working together with the family to identify the
problem and to develop a plan of action. In crisis
intervention the goals are limited to resolving the
problem and restoring equilibrium. Longstanding
problems, such as chronic alcoholism, requiring
more help may well necessitate the need for refer-
ral to other resources. Hope and positive expec-
tations are essential, not hope that the person will
be cured, but hope that in working together we can
resolve some specific problems. Finally, support is
given which may be concrete and focus on the pro-
vision of specific resources or learning tasks or
emotional and provide a sense of ’being with’ the
family in their time of crisis.
The counselling and psychotherapy offered in
hospices may be supportive and focused primarily
on coping with the current situation or
psychotherapy may be insight-oriented and
focused on examining intrapsychic defences and
changing preexisting personality or behaviour pat-
terns. Insight-oriented psychotherapy would
generally require a longer life span than may be
available in a hospice setting. Tarnower4° notes
42
that psychotherapy for cancer patients may be con-
sidered to be either a preventive measure or else a
treatment for emotional illness. Preventive
therapy may enhance the individual’s ability to
cope with the extreme stresses, anxiety and
depression that accompany the diagnosis and
treatment of cancer. He suggests that such
preventive therapy might include individual or
group work for the patient and/or family or
pastoral counselling. Preventive therapies are used
to avoid such serious emotional difficulties as in-
capacitating anxiety, disorganizing anxiety,
chronic anger, fear, seclusiveness or an altered life
pattern with undesirable relationships or destruc-
tive outcome. Psychotherapy as treatment for
mental illness would include therapy to treat per-
sistent signs and symptoms of mental disturbance
that seriously interfere with the person’s function-
ing at home, at work or in social relationships. In
terminally ill patients and/or their family members
such symptoms might also involve severe emo-
tional symptoms evolving from the confrontation
with death. Shneidman 41 cautions that
psychotherapy with dying persons involves work-
ing with an individual who is a living beehive of
emotions, especially anxiety, the fight for control
and terror. He proposes that in psychotherapy
with the dying one needs to be aware of three as-
pects of the dying process: (1) the philosophical
(moral-ethical-epistemological); (2) the sociologi-
cal (situational) aspects; and (3) the psychological
(characterological) aspects and he proposes a
series of specific rules for psychotherapy with the
dying.
Stedeford42 provides a very useful model of in-
tervention with the psychological symptoms of pal-
liative care patients which may necessitate referral
for treatment with psychotherapy or drugs. She
suggests psychiatric assessment for symptoms of
psychosis, paranoia, mania, depression, hysteria,
anxiety states with somatic symptoms or with de-
pendent clinging behaviour or nightmares, and
with anger and grief. She notes that treatment it-
self may well lead to the expression of anger and
grief which may of course result in an increase in
symptoms for a period of time, but eventually the
goal would be for acceptance of the inevitability of
the impending death.
Fryer43 notes that psychotherapy with palliative
care patients and their families is usually different
from that with physically healthy people or with
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those at earlier point in their illness process. He
an
suggests that the primary differences are with re-
gard to the dimensions, issues and goals of
therapy. The time dimension is altered given that
time is limited. Therapeutic contracts must always
be open to renegotiation. The setting must be flex-
ible and negotiated with regard to the needs of the
dying person. The palliative care psychotherapist
must not be office bound, but must be willing to go
to the home or hospice as the patient’s condition
requires this. The limited time which palliative
care patients have means that each visit might un-
expectedly be the last, in that death, debilitating
weakness, coma, confusion or even acceptance of
death may terminate the therapy. He stresses that
in this type of work the family and staff must usu-
ally be involved in some way in the therapy.
With regard to the issues raised in
psychotherapy and counselling with palliative care
patients, Fryer43 notes that affects are more impor-
tant than cognitions. It is more important to deal
with the intense emotions of sadness, confusion,
depression and anger than to necessarily develop
insight into the psychodynamics involved. Fryer
warns therapists that transference (the positive or
negative unconscious transfer of the patient’s feel-
ings and reactions originally associated with
figures in the patient’s early life to the therapist)
and countertransference (the therapist’s conscious
or unconscious response to the patient) issues are
much more difficult in the hospice situation than in
traditional therapist-client relationships. The
transference/countertransference issues which
may need to be addressed may involve issues of
closeness and distance, spiritual and philosophical
issues and the patient’s previous experiences with
loss and death. The therapist’s counter-
transference issues may involve feelings of
omnipotence and the feeling that through insight
one might be able to save this ’special patient’ from
inevitable death; threats to the therapist’s personal
spiritual and philosophical belief system; as well as
difficulty in confronting this death because of pre-
vious unresolved losses in the therapist’s life. Fryer
warns that therapeutic issues such as touching,
hugging, long sessions, crying and the human ex-
pressions of feelings which accompany this difficult
time of life can offer opportunities for therapeutic
understanding and growth, but must be tempered
by the necessity to arrive at appropriate levels of
therapeutic distance and closeness in order to

maximize effectiveness. It is critical in these situ-
ations that the therapist does not consciously or
unconsciously attempt to usurp the role of the
family members in the handling of the patient’s
emotional needs. It has happened that therapists
have felt that the patient’s spouse was not able to
meet the patient’s emotional, physical and/or
sexual needs and the therapist, often experiencing
a countertransference has, therefore, decided that
it was ’therapeutic’ to attempt to meet these needs
of the patient. Likewise, family members will
sometimes fantasize or propose sexual liaisons
with therapists or other caregivers because of a
transference in which it is fantasized that either a
sexual liaison with the therapist will restore the
dying or dead person or else that a sexual relation-
ship with this omnipotent person will assure health
and/or ward off death for the remaining partner. It
is crucial that therapists be quite clear about their
own conflicts and vulnerabilities, in order that
these are not acted out through patients and/or
their family members. Psychotherapists working
with the dying need to be certain that they either
obtain supervision or have colleagues or personal
therapists with whom they can discuss these issues
should they begin to present problems. The
psychotherapist working in isolation and maintain-
ing a completely confidential relationship may be
particularly vulnerable to these counter-
transference difficulties.44 So too may the home
care staff of a hospice programme be vulnerable.
Their work, which occurs in the relative isolation
of the patient’s home, may allow for a greater level
of intimacy between patient and caregiver or care-
giver and family member. This intimacy has many
advantages, but may also leave the caregiver open
to the difficulties of overinvolvement and over-
identification.44
With regard to the goals of psychotherapy in pal-
liative care, Fryer 43 suggests that the goals of short-
term satisfaction and relief of symptoms are more
important than traditional delayed gratification.
He suggests that the patient be encouraged to ex-
press his or her conflicting emotions about the im-
pending death. He reviews the management of
psychiatric and behavioural problems such as de-
pression, anxiety, hypomania, schizophrenia, or-
ganic disorders and addiction and suggests that
nonpsychiatric members of staff may well be able
to provide psychosocial intervention and assess
symptoms with some of these disorders over time.
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43
However, with some problems such as severe de-
pression with vegetative symptoms, especially if
the patient is suicidal, referral to a psychiatrist
should be initiated. He suggests that anti-
depressants might well be appropriately used in
such situations, but cautions that they should be
tapered and stopped as the patient approaches the
final stages of the illness, as the toxicity of the drug
often outweighs the therapeutic advantages at this
time.
Feigenberg45 has proposed a different model of
intervention with the terminally ill in which he sets
up ’friendship contracts’, in which the therapist has
a completely confidential relationship with the
dying person. Family and staff are excluded from
this relationship and the therapist exchanges no in-
formation with them. It is probable that such re-
lationships would not be acceptable in the hospice
setting, with the concept of a team and shared in-
formation.
Finally, hospice teams must carefully assess the
issue of shared information and confidentiality
when patients and families are receiving counsel-
ling and/or psychotherapy. It is necessary to devel-
op norms with regard to the amount of information
which should be shared between the therapist, the
staff and the family with regard to what would nor-
mally be considered to be confidential issues. The
usual professional norm of the therapist not shar-
ing any information with the family and carefully
assessing the information to be shared with pro-
fessional staff may not be completely appropriate.
The sharing of information can sometimes lead to
improved communication amongst family mem-
bers prior to death. That may sometimes mean that
the therapist will ask the patient’s permission to
share particular confidences with the family or
staff. Fryer43 suggests that in the terminal situation
it is important to facilitate the integration of the
patient back into the family and into the work that
other caregivers are rendering in order that gains
can be acknowledged and celebrated. Likewise,
sometimes the sharing of some of the patient’s
thoughts and feelings with the family after the
death might be helpful to the family in the resolu-
tion of their grief experiences. The author has
sometimes found it difficult to decide what in-
formation may appropriately be shared with the
family after death and has found it helpful to use as
a guiding principle the concept that the most im-
portant issue in bereavement work is the survival
44
of the family in as healthy a form as possible. If it
would help the family to know certain information
in order to resolve their grief then the author will
share that information. For example, a family may
be helped to know that a dying person had told the
therapist that he did really love his wife, despite
the fact that he had never been able to tell her so.
However, the family would not be helped to know
that the deceased had often experienced suicidal
feelings because he felt that his wife would be un-
able to care for him during his terminal illness.
Efficacy of counselling and
psychotherapy in hospice
An assessment of the efficacy of counselling and
psychotherapy in hospice care is difficult because
the few studies which have been done to document
the impact of hospice care on patients and families
have usually evaluated the efficacy of the pro-
gramme as a whole and have not documented the
specific counselling and psychotherapy interven-
tions which have been used, let alone which types
of intervention have been most successful. One ex-
ception to this evaluation approach is a controlled
study of 120 terminally ill men not being treated in
a hospice setting.46 The experimental group re-
ceived counselling by one male counsellor who is
described as being able to tolerate working with
the dying and trained in counselling and the hos-
pice movement. The type of intervention used is
well described and consisted of counselling as
opposed to insight-oriented psychotherapy.
Patients were seen several times a week, the objec-
tive being to develop a trusting relationship in
which the patient could relate freely. Efforts were
made to reduce the patient’s denial, but to main-
tain hope. Feelings of control over the environ-
ment were stressed. Patients chose whether or not
to complete unfinished business, plan for their
children, or decide about treatments. Meaningful
activities were encouraged for as long as possible.
Patients were encouraged to do a life review4’
which helped to reinforce accomplishments,
develop a sense of meaning in one’s life and pro-
vided a basis for increased self-esteem and life
satisfaction. Family members were seen if and
when the patient wanted them to be seen. The
counsellor was often with the patient when he died
and the relationship with the family is described as
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being such that the counsellor was often the first
person called when the person died at home. The
therapist often helped to plan the funeral, sup-
ported the bereaved family, attended the funeral
and followed up the family after the death.
The results of the study showed that there was
no difference between the experimental and con-
trol groups at one month after referral, but by
three months depression was significantly lower
for the experimental than for the control group.
This finding did not hold true for the rest of the
study. Life satisfaction and self-esteem were
significantly increased for the experimental group
compared to the control group at 3, 6, 9 and 12
months after referral. Alienation and locus of
control had a delayed effect, with those in the ex-
perimental group who lived longer showing less
alienation and more internal control. Controlling
for one-year survivors, the quality of life showed a
significant change in favour of the experimental
group, with those living the full twelve months
showing the most significant gains. The interven-
tion also had a positive impact on family members,
in that by three months after referral they were sig-
nificantly more able than control families to be
able to accept the diagnosis more fully, offer more
emotional support and discuss death more freely
with the patient.
The studies which have documented the specific
psychosocial intervention being carried out in
hospices have generally tended to report on the
work of nurses. Mulhern 48 compared the care-
oriented and cure-oriented interventions of hos-
pice and nonhospice nurses using a retrospective
analysis of the records of the last 14 days of life in
30 patients. She found that the greatest difference
between the care offered to the two groups of
patients and families was the fact that those receiv-
ing hospice care had more opportunity to express
their thoughts and feelings regarding what was
happening to them. The author concluded that
hospice nurses were found to be more responsive
to the emotional and personal needs of patients as
the event of death approached than were non-
hospice nurses.
With regard to the outcome of the emotional
needs or psychiatric symptoms of hospice patients
and their families, studies can be divided into the
most rigorous study in which patients were ran-
domly assigned to either a hospice or nonhospice
programme,’° studies in which hospice and

nonhospice patients were compared with regard to
outcome, 19,25,49-52 and studies which describe the
outcome of hospice services using no control group
comparison group. 53-54 In none of these studies is it
clear exactly what type of psychosocial interven-
tion was offered to patients or their families.
The most important study to test the efficacy of
hospice intervention is that of Kane, Klein,
Bernstein, Rothenberg and Wales The work of
these authors derived from the assumption made
in descriptive studies that increased communi-
cation between the family members and health
professionals regarding the care of the patient
tended to increase satisfaction with the care of the
patient, thereby relieving the anxiety of the fam-
ily member. They state that there is a growing body
of literature as to the needs of these family mem-
bers, but prior to their study there had been no
clinical trial actually to assess the benefits of hos-
pice care for patients and their significant others.
Kane et al. randomly assigned patients to either the
hospice service at the Veteran’s Administration
Medical Center or else to continue in the pro-
gramme of care they were already receiving.
Patients eligible for the study were thought to have
between two weeks and six months to live. Of the
263 patients eligible for the study, 246 agreed to
participate, but 10 dropped out for an overall par-
ticipation rate of 90%. The average age of the
patients was in their early sixties. Because of the
nature of the Veteran’s population, 97% of both
groups were men. Three-quarters of the patients
had a significant other who would be eligible to
participate in the study. Of these, 95% agreed to
participate and 6% dropped out after enrolment in
the study. The groups were comparable with re-
gard to demographic variables and disease.
The hospice service is described as consisting of
an 11-bed unit staffed by two physicians, 19 nurses,
a social worker, a chaplain and approximately 30
volunteers. In addition there is a home care pro-
gramme and consultation service. There is no
statement as to the exact services received by
patients, nor any attempt to rate patient or signifi-
cant other outcome based on the specific services
offered. It is noted, however, that a previous
study55 had found that patients with significant
others received more attention from staff members
than did patients without such resources. The
study used the needs identified by Hamper which
have been elaborated on by other authors. De-
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45
pression was measured using 16 of the 20 items
from the National Institute of Mental Health’s
Center for Epidemiologic Studies depression
scale.56 Anxiety was measured by an instrument
derived from the General Well-being Measure
used in the Rand Health Insurance Study.5’
Follow-up interviews until the time of death
showed no significant difference between the hos-
pice and nonhospice patients with respect to de-
pression or anxiety, but hospice patients did have
significantly greater levels of satisfaction as
measured by two out of three variables: inter-
personal care and involvement in care decisions.
The significant others of hospice patients showed
significantly less anxiety than did caregivers of
nonhospice patients. They also reported greater
satisfaction with involvement in patient care than
did control significant others. The authors note
that the anxiety and depression scores of both
groups of patients were not remarkably high when
compared with the norms for these scales. The
authors express some concern regarding the
relevance of their findings as this was a male
population, being treated within a hospice which
provided a full range of services with a large
complement of staff. They suggest that perhaps,
because the services provided were free, the
respondents might have been hesitant to complain
about them. However, they suggest that given the
fact that their results are quite similar to the un-
published data of the National Hospice Sturdy, 24
their concerns about relevance might be
assuaged. They are currently reviewing the longer-
term effects of the intervention, using the
bereaved significant others. Criticisms of the
methodologies and findings of both studies has
come from the National Hospice Organization
Kane 35 had concluded that while hospice does pro-
vide an appropriate alternative form of therapy for
the terminally ill, both the UCLA study&dquo;’ and the
National Hospice study24 had found that it was no
better or worse than conventional care. Mahoney
of the National Hospice Organization suggests that
these findings are reflective of the difficulties in-
herent in the measurement of the variables in-
volved in hospice care.
Smaller, non-randomized control studies of the
effects of hospice care have shown that when hos-
pice patients are compared with nonhospice pa-
tients, the hospice patients were found to have less
unease than nonhospice patients and to have more
46
praise for hospice therapy, staff, explanations and
place, as well as being less troubled over the out-
come of their illness while they were well aware of
its terminal natures In addition, hospice patients
were found to have less depression, anxiety, hostil-
ity, somatization and interpersonal sensitivity than
nonhospice patients, as well as less social and
leisure activity and fewer relationship problems
with spouse and family members. 25
Comparing the family members of hospice and
nonhospice patients, the former were found to
have lower levels of anxiety, depression, hostility
and social maladjustment. 25 In another study they
were found to have less anxiety before, but not
after, death and to be less worried about revealing
their fears to the dying person.5o,s~
When the bereaved survivors of hospice patients
were compared with a control group which was not
matched, it was found that the only significant dif-
ference was that the hospice survivors felt more
emotional support from staff. There was no differ-
ence in the involvement they reported in patient
care nor was there any difference in bereavement
outcome. Given the large number of variables in
this study and the fact that only one was significant,
the authors questioned whether or not this was a
chance finding.49
Parkes59 attempted to measure the direct impact
of the effectiveness of psychosocial care on the
bereaved survivors of St Christopher’s patients
and found that it was not possible to obtain a
measure of the effectiveness of psychosocial care
which was independent of the effects of symptom
control. He found that the patient’s pain was likely
to give rise to anxiety in the spouse, so that anxiety
was a measure of both components of care. Even
so, he found that lessening the patient’s pain did
not necessarily decrease the survivor’s anxiety.
Spouses were found to be significantly less anxious
when their dying partners were in hospice than in
any other setting.
With regard to the documentation of the types of
services offered to hospice patients, Gotay6o
quotes the National Hospice study as finding that
hospice patients received more social services than
did nonhospice patients, although it was not clear
that this intervention significantly affected the
patient outcome. Lack and Buckinghamzs found
that two-thirds of their sample had fewer
than 10 visits by social service personnel, while
8% had 30 or more visits; 44% received one
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or two bereavement visits, while 37% received
more than four visits. In the Bass, Garland and
Otto study,’6 few patients received social worker
visits: only 17% of the group had even one visit
from a social worker. All patients received nursing
visits, with a mean of 14.3 nursing visits per patient
and an average of 3.5 visits per week. The nurses
felt that they were unable to intervene with the
emotional needs of patients and family members
because of the demands of the physical care and
teaching needs of the patients and families in this
study. Whether it would have been possible for so-
cial workers to accomplish more psychosocial in-
tervention than the nurses were able to, had the
social workers visited more of these patients and
families, must remain an unanswered question.
It is also difficult to assess the extent of
psychiatrist involvement in hospice care in order to
ascertain the effectiveness of intervention by psy-
chiatrists. Parkes6l reported contacting 64 units
providing terminal care in Britain. Of the 38 units
which answered, only eight reported having con-
sultant psychiatrists. A group of psychiatrists in-
volved in hospice care, including Feigenberg,
Parkes, Fryer and Stedeford, attempted to
delineate the role of the psychiatrist in the care of
the dying. 62 This role included assisting other team
members in the diagnosis and treatment of organic
and functional psychiatric disorders and advising
on the use of medication and other forms of treat-
ment that may affect behaviour, mood and
cognition. More recently, Fryer 43 elaborated on
the role of the psychiatrist in hospice, yet it is still
not clear how many hospices actually have consult-
ing psychiatrists and what role they play within
these organizations. Liss-Levinson63 quoted an
earlier study by Buckingham and Lupu64 exploring
the role of those who might traditionally be ex-
pected to carry out psychosocial intervention.
They found that only 21 % of hospices employed
psychologists, while 46% employed chaplains and
75% employed social workers. Writing as a
psychologist as well as a hospice administrator,
Liss-Levinson questions the role of the
psychologist on the hospice team and warns
psychologists that they will need to be able to ad-
dress practical issues if they are going to work on
hospice teams. He observes that if the patient
needs money for basic subsistence then he is not
going to be helped by talking about his anxiety
about his financial problem. Rather, he will ask ’so

what are you going to do for me?’
Turk and Salovey65 warn that mental health pro-
fessionals serving as consultants to hospices tend to
see only those having the most difficulty in adjust-
ing to their plight. They are expected to help
patients to cope better, but often have little
specific knowledge about the disease which the
patient has and they tend to base their approaches
on general knowledge as well as on their theoreti-
cal orientation. They caution that without
adequate knowledge these clinicians may resort to
face valid approaches or rely on a priori assump-
tions and approaches to treatment that may not be
appropriate for patients with specific types of
cancer, different beliefs and expectations about
cancer and different coping and social support
resources.
Finally, to review the impact of hospice pro-
grammes on bereaved survivors, studies have
generally found little difference in the bereave-
ment outcomes of hospice and nonhospice
survivors. 49,66 Another important finding which
has emerged in a few studies is the fact that not all
patients and family members desire psychosocial
intervention and may indeed find it intrusive. 49
The studies which best measure this desire for in-
tervention are those looking at bereavement out-
come. With regard to bereavement intervention,
de St Aubin and Lund found that when hospice
staff were available for bereavement home visits
and had six bereavement support sessions, 23 out
of 28 survivors used the services. However, there
was an average of only 2.1 bereavement contacts,
leading one to question the efficacy of the
programme.49
Reviewing bereavement services in hospice
programmes, Osterweis, Solomon and Green6’
found that bereavement counselling was offered
by the professional bereavement counsellors, who
were often nurses. The programmes they surveyed
had concerns regarding whether bereavement
counselling should be done by those who were in-
volved with the family prior to death or whether
the bereavement counsellors should be different
people. There may be strengths to maintaining
continuing ties with the same staff members, how-
ever ; the author has observed that many hospice
workers derive job satisfaction from the resolution
of symptoms. Bereavement takes time and cannot
be alleviated with the proper titration of medi-
cation. Thus, many hospice workers find this role
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47
to be quite stressful. In addition, many have said
that they feel guilty when they confront the
bereaved survivors, as though they somehow let
them down by ’allowing’ the patient to die, thereby
causing the survivors such pain. Obviously hospice
caregivers who have such feelings need to resolve
them. Nevertheless, they may still not be suited for
bereavement work.
Osterweis, Solomon and Green 67 found that
70% of the United States hospices they surveyed
offered services to the bereaved, but these were
often internal, targeted primarily to those who
were expected to work through their grief without
professional help and focused primarily on edu-
cation and support. When required, referral to
mental health professionals was arranged. The
authors quote Boulder Hospice as finding this was
necessary in only 5% of cases.
Suggestions for future research
Clearly there is much work to be done in the
documentation and evaluation of psychosocial in-
tervention for hospice patients and their families.
A review of the literature indicates that between
one-quarter and one-half of hospice patients and
their families may either want or need help in deal-
ing with their emotional needs. Many do not want
or perhaps need such help. The challenge to hos-
pice providers will be to document those most at
risk of having emotional distress in response to
their dying process. It has been suggested that un-
less the patient/family unit is an active demander of
care, less care will be given. Those most likely not
to be active in seeking care include the poor, the
aged and minority groups. 68 It has also been
suggested that hospice may well be used more
often by those who are psychologically more
healthy and perhaps less at risk of a poor out-
come. 67 Certainly the fact that many hospice pro-
grammes in the United States require that patients
have a significant other to care for them means that
socially isolated persons may be eliminated from
hospice programmes. In order to document those
at risk, it may be necessary to develop appropriate
models and tools to assess risk. Work to develop
some such models is underway .69,70 It will then be
necessary to develop and document programmes
of intervention targeted to meet specific needs and
then to assess the outcome of these interventions. 71
48
We must not simply become defensive in response
to studies which show that hospice may not be any
better than other forms of care. We must become
scientific in the documentation and evaluation of
what we are doing and work to improve services in
order that the appropriate form of psychosocial
intervention be offered to those clients who most
need it. The results of this intervention may not be
immediately apparent and indeed we may risk hav-
ing hospice patients, family members and sur-
vivors appear to be doing worse because they have
learned to identify and express their emotions and
emotional needs, rather than repressing them. Yet
we must continue with the struggle to offer the best
possible care to those people who most need it dur-
ing the crisis of the dying process and well into the
bereavement period.
Conclusions
It be concluded that although the efficacy of
can
hospice programmes is often thought to result in
improved psychosocial outcomes for patients and
families, it is not possible to assess the type of inter-
vention which is carried out, let alone that which is
most helpful to patients and their families. It is
quite probable that the programme as an entirety
with a focus on patient/family involvement in
decision-making, symptom relief and the provision
of emotional support in the manner which the
caregivers might feel is appropriate is what results
in the somewhat improved outcomes seen in some
hospice studies. However, clearly there needs to
be more work on assessing who needs what type of
involvement and support in hospice care. It is clear
that hospice objectives need to be more precise
and measurable and perhaps should be targeted to
those at high risk. Torrens’2 warns that hospice
workers have not been vigorous enough in policing
the quality of their work, preferring to judge
hospice simply in terms of a moral good. The time
has come carefully to document and evaluate the
psychological aspects of hospice care.
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