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Bone Marrow Transplantation (2009) 43, 265–273
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REVIEW
Palliative care in BMT
HM Chung1,2, LJ Lyckholm1,3 and TJ Smith1
1
Department of Internal Medicine, Division of Hematology/Oncology and Palliative Care, Massey Cancer Center, Virginia
Commonwealth University, Richmond, VA, USA; 2Bone Marrow Transplantation Program, Massey Cancer Center, Virginia
Commonwealth University, Richmond, VA, USA and 3Department of Internal Medicine, Division of General Medicine and Bioethics,
General Medicine and Bioethics, Massey Cancer Center, Virginia Commonwealth University, Richmond, VA, USA
The field of high-dose therapy and SCT has made many
advances in the past several years and the success rates
have been steadily increasing as newer therapies emerge
and improvements in supportive care continue to improve
patient survival and cure rates. There still remains a
mortality risk for high-dose therapy and the need for
palliative care becomes more apparent as the focus also
incorporates quality of life in all facets of cancer
treatment and care. This paper reports on the lack of
literature available on palliative care into the BMT and
explores areas of future research in the integration of
these two fields of medicine.
Bone Marrow Transplantation (2009) 43, 265–273;
doi:10.1038/bmt.2008.436; published online 19 January 2009
Keywords: palliative care; hospice; symptom management
Introduction
Transplanters:
‘Here comes the Death Squad.’
‘The palliative care people say ‘In fact, there IS
something we can do.’ It’s just not what my patient
came here for—to be cured.’
‘A 6% chance of cure is better than a 0% chance of
cure.’
Palliative Care Types:
‘It sure would be nice to see these patients earlier.
Like when they could talk. Hard to plan a life review
when she’s comatose and has 48 h to live.’
‘Well, what about the 94% who go through living hell
in order to benefit that 6%? Shouldn’t they know the
odds, and what they’re getting into, because I think
some of them would choose differently.’
‘Every transplant program already has a palliative
care unit where people go to die. The MICU.’
One of us (HC) was lecturing on methods to integrate
palliative care (PC) concepts into BMT when approached
by a transplant colleague. His comment was ‘Isn’t that an
oxymoron?’ The divide can be sharp with transplanters
thinking that PC is the ‘death squad’ and PC thinking that
transplanters do not communicate goals or effectiveness of
treatments truthfully, and do not know how to relieve
common symptoms. The two teams rarely meet, except
when a patient is dying, often after a long intensive care
unit (ICU) stay.
In fact, the two fields should be complementary. High-dose
chemotherapy and SCT is an established way to cure or remit
serious illnesses. Approaches such as nonmyeloablative,
reduced intensity, cord blood and double cord blood transplant
are increasingly effective with less toxicity. The main focus of
SCT in years past was to give patients ‘a second chance’ when
all else had failed. But over the years, this mantra has slowly
shifted to more of ‘Do everything possible to obtain remission
and a chance of cure without sacrificing too much quality of
life.’ Transplant teams have been at the forefront of supportive
care with emphasis on management of infections, mucositis,1
nutrition,2–6 pain during transplant7–9 and even truthful
communication about prognosis.10
Transplant clinicians may not realize that PC is not the
same as hospice care. PC is care given to seriously ill
patients alongside usual medical and surgical care (Box 1).
The fields should mesh well, but there has been no
exploration of that relationship. The only articles published
were a case report of PC for a patient undergoing
transplantation for CML,11 death and dying issues for
nurses caring for patients undergoing BMT12 and reviewing
educational standards in BMT and PC.13 Toxicities are
considerable, communication that is both hopeful and
Box 1
Correspondence: Dr HM Chung, Division of Hematology/Oncology
and Palliative Care, Massey Cancer Center, Virginia Commonwealth
University, 1300 E College Street, North Hospital, 10th Floor, BMT
Unit, Richmond, VA 23298-0157, USA.
E-mail: [email protected]
Received 4 August 2008; accepted 23 November 2008; published online
19 January 2009
What is palliative care? As stated by the National Consensus Project,
palliative care is ‘The goal is to prevent and relieve suffering and to
support the best quality of life for patients and their families,
regardless of the stage of the disease or the need for other therapies.’
(145, Anonymous) Also described by the Center to Advance
Palliative Care as, ‘Interdisciplinary care that aims to relieve
suffering and improve quality of life for patients with advanced
illness and their families.’ (143, Anonymous)
BMT and palliative care
HM Chung et al
266
realistic is a challenge and relapse continues to be a
problem. With that lack of documented information noted,
we sought to explore how PC and SCT could or should
interact.
Symptom management
Symptom assessment and management
There have been no recent attempts to assess the symptoms
that BMT patients experience. One 1993 paper recorded
symptoms rated by 30 patients compared to symptoms
rated by nursing staff during a BMT. It was reported that
nurses underestimated their patients’ symptoms, and thus
might not be expected to relieve them.14 There is good
evidence from two cancer centers that PC is effective in
reducing cancer symptoms even for patients with hematologic malignancies. Figure 1 shows the improved symptom
measures with PC consult at MD Anderson Cancer
Center,15 similar to findings at our center with nontransplant cancer patients.16 A PC approach of multiple
symptom assessment every day to uncover hidden symptoms, with an algorithm-based plan for treatment, is
planned.
ESAS 0-3
Pain
The use of patient-controlled analgesia (PCA) and continuous i.v. morphine or other opioids for pain in BMT
showed similar benefit, but, less consumption when patients
had control of their medication administration.8,9,17 Comparison of the different opioids was performed in transplant patients in 1996 by Coda et al.,7 who recommended
that morphine be the first choice of opioids for patients
undergoing high-dose therapy and transplantation. As in
PC, due to its effectiveness and easy titration as well as dose
conversion to other narcotic pain medications, PCA
morphine has become the standard for pain management
for BMT programs.18
Mucositis
Oral mucositis can significantly impact quality of life
(QOL) and survival. Besides the pain, there is also
increased risk for infection, altered nutritional status and
even increased risk of GVHD by way of epithelial
disruption.19 One of the biggest challenges in studying
ways to alleviate mucositis and pain associated with
mucositis was developing an objective evaluation method
that was consistent for comparison from one patient to
another. Factors such as oral pain assessment, opioid use,
oral intake and objective scoring of oral mucositis have
been proposed.20 Recently, a new outcome measure has
been developed and validated, the Patient-Reported Oral
Mucositis Symptom scale.21 This scale may reflect more
accurately patients’ symptoms and the efficacy of mucositis
treatments.
An effective method to prevent mucositis was reported in
2004 by multiple cancer centers participating in a trial of
keratinocyte growth factor, palifermin.22 Grades 3 and 4
mucositis occurred in 63% of patients receiving palifermin
compared to 98% of those receiving placebo. The median
duration of mucositis was also decreased by greater than
50%, 3–4 days in those receiving palifermin compared to 9
days in those receiving placebo. There was also a significant
decrease in the use of i.v. narcotics for pain control and
need for parenteral nutrition in patients receiving palifermin. The cytoprotectant amifostine may help in the
prevention and treatment of oral mucositis.23 In this study,
35 patients received amifostine as part of the preparative
regimen: 40% of patients experienced severe mucositis
compared to 94% of patients in a historical control group.
Supersaturated calcium phosphate mouth rinse in combination with fluoride rinse was compared to fluoride rinse
7
Pain
6
Nausea
5
Depression
4
Anxious
3
Shortness of breath
2
Drowsy
1
Appetite
0
1st day
Figure 1
Comparison day
Fatigue/activity
Symptoms are improved by palliative care (PC) consultation or transfer at MD Anderson Cancer Center. Edmonton Symptom Assessment Scale
0–10. Data from Elsayem et al.15
Bone Marrow Transplantation
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HM Chung et al
267
alone and was found to show statistically significant
reductions in duration of mucositis (3.72 vs 7.22 days),
duration of pain (2.86 vs 7.67 days), dose of morphine (34.5
vs 122.8 mg) and days of narcotic use (1.26 vs 4.02).24
There are other PC methods to treat or prevent
mucositis. Glutamine is a nutritional additive that may
accelerate the healing process in mucositis.5,6 Oral cryotherapy can help prevent oral mucositis; in 80 patients
undergoing high-dose therapy and autologous SCT there
was a clinically significant reduction in the severity of
mucositis as well as less use of i.v. narcotic for pain relief in
those randomized to oral cryotherapy compared to those
receiving standard oral care.25 A 1995 study showed
clinically significant reduction of mucositis pain in those
patients with cancer who utilized relaxation and guided
imagery or cognitive behavior training26 but the study has
not been replicated. Further work combining PC and BMT
methods is needed.
Nausea and vomiting
Standard antiemetics have been used in high-dose therapy
including phenothiazines, benzodiazepines and serotoninuptake inhibitors with varying degrees of success. Although
not studied extensively in patients undergoing high-dose
therapy, haloperidol27 and olanzapine28 have been beneficial in patients with refractory nausea and vomiting.
Many of the methods used in PC and BMT are the same.
Other nontraditional treatment options such as scopolamine showed efficacy compared to usual antiemetic therapy
in those patients receiving highly emetogenic chemotherapy
including cisplatin in early trials29 and in combination with
other antiemetics.30,31 Although more effective for motionrelated nausea and vertigo, complementary treatments,
such as acupressure bracelets studied in 739 patients who
had improvement in nausea on the day of chemotherapy,32
guided imagery as discussed in a pilot study twice a week
during inpatient transplantation,33 and healing touch.34
Gastroparesis of uncertain etiology may be a primary
cause of nausea in BMT.35 Eagle et al.36 evaluated 151
transplant patients during a 1-year period and found that
gastroparesis was a significant cause of persistent nausea in
12% of patients. Factors such as age, conditioning regimen,
CMV antigenemia and acute GVHD were not significant;
however, receiving allogeneic transplantation was a significant factor. Compared with those receiving CYA,
patients who were given tacrolimus tended to have a
decreased incidence of gastroparesis, a finding that trended
toward significance.37 This was most likely due to the
prokinetic properties of tacrolimus. We could find no
reports evaluating the efficacy of common PC measures
such as erythromycin, metoclopramide or acetylcysteine in
patients undergoing high-dose therapy and suffering from
gastroparesis.38
Nutrition, anorexia and weight loss
The use of total parenteral nutrition (TPN) in BMT was
first reported in 1980 by Schmidt et al.2 in the Journal of
Experimental Hematology. TPN usage was later studied in
44 patients who were divided into two groups, those who
received prophylactic TPN for nutritional support and
those who did not.39 Those patients who were given TPN
upfront engrafted 3 days sooner than those who did not, a
result that was significant and not related to initial cell dose
infused. The use of TPN in transplantation was then
studied in a randomized, prospective manner in 61
patients.3 Total 31 patients received TPN whereas the
remaining 30 patients were continued on enteral feeding.
The results of this study revealed that there was no
difference in outcome from transplantation measured in
days to recovery of counts and length of hospitalization,
and there was an increased risk of morbidity due to
increased use of diuretics (11 vs 4 days), increased incidence
of hyperglycemia (9 days vs 2 days) and more catheter
removals (13 vs 3) due to complications from i.v. nutrition,
not to mention the cost of i.v. TPN being 2.3 times higher
than enteral feeding. The authors of this study recommended that the use of TPN be restricted to those who
could not tolerate enteral feedings. Long-term difficulties in
appetite, taste and weight maintenance were common in the
year after transplantation especially after TBI but we could
not find any report of effective interventions.40
GVHD
GVHD can lead to increased morbidity and mortality.
Several methods were designed in hopes of controlling
GVHD but it remains a significant problem as some
amount of GVHD is necessary. Many of the systemic
therapies for GVHD for symptoms have been tried in
addition to topical steroids and calcineurin inhibitors with
varying degrees of success. Until these are more successful,
we are left with standard symptom control measures such
as the National Comprehensive Cancer Network Guidelines for the prevention and management of oral mucositis
in cancer care,41 which include those cited in the Mucositis
section.
Diarrhea
Whether due to mucosal disruption from high-dose
chemotherapy and/or radiation, or from GVHD, diarrhea
can be a severe and life-threatening complication from
BMT due to electrolyte loss, malnutrition and bleeding.
Medications such as loperamide and diphenoxylate have
been used with varying degrees of success. For more severe
diarrhea, somatostatin analogues such as octreotide have
been reported and used with success including the first
reported case in 1990 in a 39-year-old man with grade 3
GVHD of the gut and responding to a 10-day course of
octreotide.42 Other PC measures have not been applied.43
Transfusion dependence
If myeloablative therapy fails to cure the disease, there are
still some patients who will continue with good QOL with
occasional transfusions. The decision then lies with the
transplant team, physician, patient and patient’s family
about the merits of ongoing transfusions and allocation of
resources. A report in 2007 regarding the cost of transfusions in those patients with hematological diseases in
hospice care in Italy found that those who were outpatient
had less costs than those requiring inpatient hospital care
depending on the frequency of transfusion and disease
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HM Chung et al
268
status.44 Another study showed patients in eight hospices in
the United Kingdom that allowed transfusions on an
outpatient basis had significantly longer survival (104 days)
vs those patients that required transfusions on an inpatient
basis (42 days),45 suggesting that removing barriers to
transfusion might increase end-of-life survival.
Communication
Communication about medical prognosis
Communication about the risks and benefits is vital to
patients and families in understanding the seriousness of
their illness and its treatment, but patients may find it hard
to obtain information about the benefits and harms of
chemotherapy or when death is a possibility. In the largest
study of 95 consecutive palliative chemotherapy patients,
prognosis was discussed by only 39% of medical oncologists.46 In a large longitudinal study of hospitalized patients
who were reasonably expected to die, the attending
physician never discussed the possibility of death 62% of
the time, and no one on the medical team discussed the
possibility of death with cancer patients in 39% of cases.47
In a more recent study of 602 cancer patients, doctors only
discussed imminent death with 31% of their dying
patients.48 Doctors may also ‘collude’ in this hopefulness
by giving such a wide range of outcomes that people choose
the most favorable.49
The data are clear that patients for the most part want
honest and truthful information. Krasuska et al.50 reported
the need for patients to have a full discussion about BMT
to alleviate some of the fears of high-dose therapy.
Concerns about the possible harmful effects of prognostic
information were studied to determine the preferences of
parents with children who were being treated for cancer. In
parents who found prognosis extremely or very upsetting,
87% wanted as much information as possible and 85%
wanted it expressed numerically.51 In pediatric oncology,
truthful prognostic disclosure did not destroy the hope of
parents, even when the news was bad. In fact, those parents
who were given more elements about prognosis found
physician communication to be more hopeful even though
the chance for cure was low.52 There is scant literature
discussing transition from curative to palliative or
end-of-life care specific to BMT.
Patients are willing to risk a lot even when well informed
and often have a different perspective than their health-care
provider.53 Agrawal et al.54 noted that patients electing for
phase I clinical trials would be willing to undergo a 10%
chance of death from a new experimental drug with no
proven track record. Lee55 documented that the patients
with the worst chance of survival had the least understanding of realistic ‘odds’. In the prospective studies about
prognosis for BMT, physicians and patients predicted
treatment-related mortality fairly accurately when the
actual mortality rate was less than 30%.55 Those patients
who had an actual mortality rate greater than 30% tended
to have greater optimism about their outcome than their
physicians. In other words, the sickest patients with the
least chance of survival were less likely to perceive their
higher mortality rates and poor prognosis. Lee56 also found
Bone Marrow Transplantation
that people who overestimated their odds of survival were
no more likely to survive than those who were realistic or
pessimistic. Similarly, in the Support Trial, patients who
overestimated their survival lived no longer than those with
pessimistic or realistic estimates, and were more likely to
die of side effects of treatment, in hospital or in the ICU.57
There are data showing that the presence of advance
medical directives is associated with better SCT outcomes,10 This study was performed to determine if
discussing advanced care planning (ACP) had adverse
effects on outcome and showed that those patients who did
not discuss ACP actually had a greater risk of death
(hazard ratio 2.11, P ¼ 0.001) than those who discussed it
before transplantation. It may be difficult for patients to
talk with their transplant doctors about advance medical
directives. Lamont58 found that 69% of patients had
discussed advance medical directives with someone. Of
these patients, only 9% had discussed it with their
oncologist and 78% of the rest did not want to talk about
this with their treating oncologist. Surprisingly, 58% of
them endorsed a strategy of discussing these difficult issues
with the anonymous housestaff or hospitalist. This
phenomenon was described by one of Lamont’s patients
as ‘you go to an oncologist to be cured, not to be buried.’58
When the BMT doctor is new to the case, the same may
apply, making it easier for the patient to discuss; if the
BMT doctor has been caring for the patient during
leukemia or lymphoma then it may require another
health-care professional to guide the discussion. Further
research is needed on how to initiate the conversation that
leads to completion of advance medical directives, because
the rate has not changed in past 20 years.59
Transitions to hospice and end-of-life care
One of the main challenges of high-dose therapy is knowing
when further medical management is futile, or that the
harms of continued treatment outweigh the benefits. Many
patients and physicians understand that aggressive measures are needed at times, and that those aggressive
interventions become inherent in the thinking process and
the day-to-day care. As transplanters, we have seen some of
the best and the worst in the field of oncology and continue
to be amazed at some of those who survive high-dose
therapy and its complications. We have a good understanding from our own experience as to what patients may
be able to achieve if they tolerate the process, and this is
perhaps one of the leading difficulties in knowing when
‘modern medicine’ has reached its limits and when patients
and/or physicians should yield to the disease.
Emotions among patients and their family members
begin to cloud the issue at times when deciding about
palliative carey will they feel as though they are
giving up too soon? They have made the decision to
move towards high-dose therapy and transplantationy are they stopping too soon? Is it a sign of
weakness or failure on the patient’s or the patient’s
family’s perspective? ‘Will my doctor think I’m
weak?’
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HM Chung et al
269
These emotions are present on the nursing side as well as
staff members who are heavily involved in the care of their
patients also see the occasional challenges of high-dose
therapy, and questions arise such as ‘Are we giving up too
soon? Should we give up? Should we have given up a long
time ago? Is the doctor pushing too hard to continue with
the process? Is the doctor not pushing hard enough?’
There are data about transitions from usual oncology
care to hospice/end-of-life care that may be informative.
Studies from the University of Michigan,60 Ireland Cancer
Center,61 Dartmouth,62 Dana-Farber Cancer Institute
(DFCI)63 and UC Davis:64 all show that introduction of
the hospice team earlier in the disease process does not
shorten survival or dismiss hope, but does appear to
improve symptoms, and allow better planning even in
phase I patients.54 Meyers et al.65 reported on 44 patients
on phase III trials ‘simultaneously enrolled into a defined
home care program focused on supportive care needs of the
patient and family, as well as assessment of the toxicities of
investigational therapy’ compared with 20 usual care (UC)
patients. QOL improved but did not reach statistical
significance. A total of 35 out of 44 simultaneous care
(SC) group were referred to hospice compared to 8 out of
15 UC group (P ¼ 0.034) with longer mean but not median
stay. Use of chemotherapy was not different, 2.5 cycles in
both groups. The SC was well accepted by patients and
caregivers. ‘Patients with advanced cancer at the time of
enrollment onto investigational therapy should have made
an explicit transition to palliative care goals but often have
not. In the current health care environment, patients with
advanced cancer without curative potential may be forced
by their health provider or health insurer to choose between
disease-directed therapies (including investigational therapy) or structured best supportive care programs’. SC may
enhance coordination of care and facilitate patients’ explicit
transition from curative to palliative intent. To validate this
approach, a randomized comparative trial evaluating SC
has been initiated but not yet been completed.
Recognition of imminent death is also important and has
recently been studied. Sullivan found that frequently when
medical teams know when a patient is dying, they do not
communicate that amongst themselves or to the patient.
Prigerson and colleagues66 have recently reported that
recognition of imminent death and making it explicitly
known to the patient and family had good consequences
and that the peacefully aware patient had lower rates of
psychological distress and higher rates of ACP.
Impact of BMT on family
To aid in the discussion of PC during the process of BMT
with the patient, it is helpful to gain insight into the
relationships with the significant other, family members
and friends. Over the past few years, there have been
several studies looking into the dynamics between patients
undergoing high-dose therapy and their family members.
Factors that may affect the caregiver and family members
include diagnosis, prognosis, the process of transplantation
and its risks and benefits, possibility of moving to another
city or state and even changes in family roles.
The earliest paper discussing the impact of high-dose
therapy on patient and family was reported in 1994 by
Lesko.67 In this study, patients and their caregivers were
followed through the process of BMT including pre-BMT
evaluation and consultation, hospitalization and post
transplantation care. Several factors were reported that
affect better outcomes including awareness of the transplant process, preparation and understanding of possible
side effects and toxicities including those that would affect
body image and patients’ coping abilities.
At McGill University, Dobkin et al.68 published a case
report exploring the dynamics of one family’s interactions
with an adolescent girl who underwent transplantation for
leukemia. On discharge, the young girl exhibited many
somatic symptoms that required her parents’ attention post
transplantation. Dobkin et al.68 went on to discuss the
many ways that family influences a patient’s recovery after
high-dose therapy. Researchers at the University of Colorado reported psychological and immunological reactions of
family members to patients undergoing BMT and found
that partners/spouses had the highest scores on negative
effects, escape-avoidance coping and psychological symptoms during the waiting period before BMT and steadily
decreasing during the course of transplantation.69 The most
stressful period was immediately after admission and before
the BMT. There was significant correlation between
anxiety, escape-avoidance coping and total percentage of
T cells and of CD4 þ cells. At Northwestern University,
researchers looked at psychosocial adjustment of patients
and caregivers before high-dose therapy and transplantation using the Impact of Events Scale and found that
caregivers reported more impairment in family relationships than patients. Information about the pre-BMT
process appears to be critical to understanding the
psychological impact that BMT can have on patients and
their caregivers.70 At St Josephs Medical Center in Towson,
MD, Grimm et al.71 discussed caregiver needs. A total of 43
caregivers were enrolled and assessed with the Caregiver
Needs Survey, a modified version of the Home Cancer
Caregiver Needs Survey. They were followed from the time
of transplantation to 12 months after. Findings supported
the importance of caregiver education of patient-care
requirements and ongoing evaluation and intervention to
meet the needs of the caregivers.
An early study by Packman72 looked at the psychosocial
impact of pediatric BMT on siblings. He looked at two
different groups of siblings who were tested and whether
they were a matched donor or nondonor. His study showed
that sibling donors were much more likely to have
significantly more anxiety, lower self-esteem and more
adaptive skills in school than nondonors. His study also
reported that one-third of siblings in each group reported a
moderate level of post-traumatic stress. At DFCI, the
parents of children with cancer who died between 1990 and
1997 were surveyed as well as the 42 pediatric oncologists
who cared for them and found that shorter time to
recognition of no chance for survival led to stronger
emphasis at decreasing suffering and greater integration of
PC.73 PC is beneficial for both patients and their families
especially when curative measures are no longer an
option.74
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BMT and palliative care
HM Chung et al
270
Problems specific to BMT that make transition to hospice
difficult
When and where to perform PC for BMT patients? This
question can be answered, ‘Well of coursey all of the time
and everywhere!’ But the crux of the question is when does
comfort rather than longevity become the primary goal of
medical care, that is, when medical management has
reached its maximum efforts, without success, and end-oflife care begins. By now it should be clear that end-of-life
care and PC are not synonymous, rather PC is provided at
all times, both in tandem with very aggressive medical care,
and particularly at the end of life.
A challenge that patients undergoing high-dose therapy
may face is not being able to leave hospital without the
consequence of a much-shortened outlook due to severe
infections and transfusion dependence. Indeed, there are
cases of GVHD that are very severe and are beyond the
scope of family members and even inpatient hospice units.
This is where the transplant unit staff and unit must be
prepared to accept those patients who cannot leave hospital
and are not able to be cared for elsewhere and adjust to the
shift in ‘pushing aggressively forward’ to providing the best
comfort measures possible for the dying patient. One must
be mindful that unit staff may need significant assistance in
adjusting their own goals of care for the patient, as that
transition can be confusing and create moral and psychological distress among the nursing and other patient care
staff.
Patients dying of GVHD may require high dose of
continuous narcotics such as morphine, hydromorphone or
fentanyl. Use of multiple antirejection drugs such as
methylprednisolone, calcineurin inhibitors, mycophenolate
and targeted protein inhibitors such as dacluzimab,
sirolimus, denileukin diftitox and experimental therapy
must be utilized to preserve QOL and treat pain and
discomfort. None of these are inexpensive drugs were
anticipated in the hospice benefit.
Patients are often given transfusions of RBCs and
platelets when high-dose therapy fails. Although hospice
providers often view these interventions as ‘aggressive,’
patients and their families see them as part of usual medical
care.75 One study showed that over 50% of terminally ill
cancer patients had subjective improvement in well-being
after transfusion, unrelated to pre- and post-treatment
hemoglobin levels.76 Although transfusions are expensive,
cannot be done at home by most hospices and are not easily
covered under the Medicare hospice benefit, they may
provide significant relief and should not be ruled out as a
palliative measure. It may be important to discuss this with
the hospice provider when enrolling the patient.
Conclusions
BMT and PC seem like obvious partners. BMT providers
may think of PC as an extension of hospice, but it is
different—and should be considered as concurrent with
aggressive care for seriously ill patients. PC has been shown
to improve symptoms in hospitalized patients,77,78 help with
the transitions of cancer patients to hospice care;61 and
reduce the costs for those dying in hospital.15,79–83
We propose a new model (Figure 2) that allows
incorporation of PC into BMT from the beginning. This
would include more explicit patient information about the
odds of treatment benefit and risks, communication about
progress including recognition of death when it is likely and
aggressive symptom management. Andorsky et al.84 evaluated the relationship of QOL before transplantation and
whether patients had a quicker, stronger recovery after
high-dose therapy. They reported that pretransplantation
self-reported physical and mental health were more
strongly associated with QOL after high-dose therapy than
the more usual clinical predictors such as age and disease
risk.84 Tools such as a symptom assessment scale (Functional Assessment of Cancer Therapy—Bone Marrow
Transplant85) or the modified Edmonton Symptom Assessment Scale (m-ESAS) scale (Figure 3) may be helpful in
allowing recognition of usual symptoms including overlooked ones as fatigue, depression and dyspnea. Incorporating this into a table used during usual rounds in standard
chart format may be helpful in focusing the team on
treatment of symptomatology on a consistent basis.
100%
Effort of care
Palliative care
Bereavement
Curative care
0%
Diagnosis
Death
Timeline of care
Figure 2
Continuum of care.
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HM Chung et al
271
Modified symptom assessment scale:
To be rated as: 0 = none, 1 = a little bit, 2 = somewhat, 3 = quite a lot, 4 = very much, 7 = Refused
Reported by:
Pain: current___, minimum___, maximum___ Anorexia____
Patient
Caregiver
RN
MD
Tiredness________
Nausea__________
Depression _______
Anxiety __________
Drowsiness _______
Constipation____
Shortness of breath/dyspnea____
Secretions____
Unable to respond: Yes___ No____
Delirium: Yes____ No___
_
Figure 3 Symptom assessment scale used in palliative care (PC). From R01CA116227-01 (Meier). Impact of PC on outcomes of hospitalized patients.
There are many opportunities for research in PC and
end-of-life issues for patients who have undergone highdose therapy and SCT. With increasing attention to this
particular facet of medicine incorporated earlier in the
course of BMT, optimal outcomes may be expected even if
the goal of prolongation of life or cure is no longer
attainable.
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