Palliative Care in the Outpatient Cancer Center

7/29/2019 Palliative Care in the Outpatient Cancer Center

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Palliative Care in the Outpatient Cancer Center:Current Trends

Journal of Hospice & Palliative Nursing:December 2012 - Volume 14 - Issue 8 - p 514515

Pamela Stitzlein Davies, MS, ARNP, ACHPNMaryjo Prince-Paul, PhD, APRN, ACHPN, FPCN

Abstract

Predictions for exponential growth in the incidence and prevalence of

cancer will present a significant challenge to the healthcare system. Most of this

care will be provided in the outpatient setting. Although inpatient palliative care

programs are well established, this is not the case for outpatient palliative care:

only 22% to 59% of outpatient cancer centers report a palliative care program,

which are usually small in scope. However, development and growth of

outpatient palliative care programs are an essential component to providing

excellence in cancer care and will be necessary to address the many new cases

of advanced cancer anticipated in the next decades. This article reviews current

trends in outpatient palliative care in the oncology setting, with a discussion of

selected major studies, methods and challenges in the provision of care, and the

impact of nurses in this emerging field.


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Int roduct ion

Palliative care (PC) consultation services have become well established in

the inpatient setting, with 92% of National Cancer Institute (NCI)-designated

cancer centers reporting inpatient PC services. However, PC programs in the

outpatient (OP) setting are much less common, with 59% of NCI cancer centers

and 22% of non-NCI cancer centers reporting OP PC programs, and these

services are generally small in scope.

The American Society of Clinical Oncology (ASCO) recommends

increased integration of PC into the oncology setting in order to achieve high-

quality comprehensive cancer care by 2020. Because a significant proportion of

cancer care is given in the OP setting, extensive development of OP PC

programs is needed to meet the growing demand. In an article titled "Outpatient

Clinics Are a New Frontier for Palliative Care," Meier and Beresford describe this

field as an essential link in the continuity of care with inpatient PC services. By

providing this link, OP PC in oncology may prevent or shorten hospitalizations,

improve quality of life (QOL) and mood, and prolong life.

This article explores the current status of palliative care in the outpatient

oncology setting in North America, including structure of care, focus of visits, and

other service issues. Opportunities and challenges for future development are

discussed, as well as the role of the nurse and advanced practice RN (APRN) in

the provision of palliative care in cancer care.

Context ual Sett ing

The American Cancer Society anticipates that the number of persons with

newly diagnosed cancer will double to 2.6 million by 2050. Although survival


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trends are increasing, half of those diagnosed with cancer still succumb to the

disease, with a current estimate of 1500 American deaths per day from cancer.

A 2004 analysis of Medicare data from 28 777 cancer patients showed that care

in the last year of life was becoming increasingly aggressive. Aggressive care

was defined as receiving chemotherapy in the last 2 weeks of life, more than one

emergency department (ED) visit in the last month of life, admission to the ICU in

the last month of life, or late hospice enrollment. Using similar criteria, a 2012

random sample of 390 deaths over 4 years at a community cancer center found

little improvement in these benchmarks at end of life. Recently, the Dartmouth

Atlas of Health Care analysis of Medicare data again showed both high-intensity

care in the last few weeks of life, along with significant variations in resource

utilization and spending throughout the US in the last 2 years of life. These

concerning findings may be mitigated by the addition of palliative care services in

the outpatient setting.

Pivotal Studies

Published literature describing palliative care in the outpatient cancer

setting is limited, but several articles are recognized as pivotal to the field.

Temel et al (2010)

Most notable is the study of Temel et al that examined the effect of

initiating early palliative care for patients with newly diagnosed metastatic non-

small cell lung cancer (NSCLC). In this nonblinded randomized controlled trial,

151 patients were randomized to receive either standard care (n = 74) or

standard care plus PC embedded in the oncology practice (n = 77). The PC team

consisted of six palliative medicine physicians and one nurse practitioner that

focused on symptom management, psychosocial needs, goals of care, and

treatment decisions. The results demonstrated that patients in the early palliative

care arm reported better quality of life and fewer depressive symptoms and lived


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30% longer than did the control arm (11.6 vs 8.9 months), despite less

aggressive end-of-life (EOL) care. Aggressive end of life care was defined as

chemotherapy within 14 days of death, no hospice care, or admission to hospice

3 days or less prior to death (33% early PC group vs 54% control group). A

secondary analysis found that those who were randomized to receive early

palliative care had half the odds of receiving intravenous chemotherapy in the

last 2 months of life and a higher incidence of hospice enrollment for more than 1

week, resulting in improved quality of life at end of life. The benefits noted in this

ground breaking study have important repercussions for increased participation

of palliative care in the outpatient cancer setting.

Bakitas et al (2009)

An important nurse-led study of palliative in the outpatient cancer setting is

the Project ENABLE II (Educate, Nurture, Advise, Before Life Ends). Three

hundred twenty-two subjects with recently diagnosed advanced cancer were

randomized to receive usual care or the palliative care intervention. Led by two

APRNs, the intervention involved four structured psychoeducational sessions

followed by monthly telephone calls. The educational sessions focused on

patient activation, self-management, and empowerment for self-advocacy with

training in communication with the oncologist. Results showed improved scores

for quality of life and mood in the intervention group compared with the usual

group, but failed to show differences in symptom intensity scores compared with

the control arm, which may have been due to relatively low symptom burdens in

the groups. In addition, no differences were found in hospital or ICU days or

emergency department visits. However, this study showed the impact of the

Advance Practice RN in education and empowerment of the cancer patient and

the benefit of palliative care toward improved mood and quality of life.

Prince-Paul et al (2010)


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In a pilot study, an Advance Practice RN was integrated into a community

oncology setting to provide palliative care consultative services to adult patients

with advanced cancer. Patients received either usual care (n = 52) or palliative

care in addition to usual care (n = 49) and were then followed up for 5 months.

The Advance Practice RN worked in a collaborative fashion, with oncologists

providing pain and symptom control, education on medication adverse effects,

psychosocial-spiritual support, and discussions related to end of life preparation.

Patients in the palliative care arm experienced significantly lower mortality rate at

4 months and were 84% less likely to be hospitalized. The authors emphasize

that palliative care services can be effectively provided to patients receiving

chemotherapy by using a collaborative model between oncology and palliative

care. By combining these specialties, more comprehensive and individualized

care can be provided, with the benefit of better symptom control and smoother

transition toward end of life care.

Muir et al (2010)

Set in a private outpatient oncology practice, the Comprehensive

Advanced Care palliative care team was embedded in the cancer clinic. This

study focused on quality care outcomes, provider satisfaction, volume of

consultations, and the time saved by the oncologist by the palliative care service.

Palliative care consultation was associated with a 21% reduction in symptom

burden and improved oncologist satisfaction. In addition, palliative care consults

saved the practice an estimated 162 hours in the second year or an average of

170 minutes of oncologist time for each new referral seen by the palliative care

service. The authors noted that embedding palliative care in the oncology team

resulted in earlier palliative care referrals and enhanced the overall effectiveness

of the care more favorably than would individual services alone. These studies

illuminate key findings of the essential contribution of palliative care toward

improving quality of life and mood without shortening life span. In addition, data


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support patients' willingness to talk about advanced disease issues and desire to

make appropriate preparations for their eventual death.

Provisio n o f Pal liative Care in the Outpat ient Cancer Sett ing

A wide variety of models exist for outpatient palliative care programs.

However, they are generally small, with 500 patient visits annually. They are

typically affiliated with cancer centers, often in close proximity to the oncology

clinic. Clinic availability ranges from one-half day per week up to 5 full days

weekly. Although clinical practice guidelines for palliative care exist, there is no

evidence to support what outpatient infrastructure is best for the patients with

advanced illness and their families. Several questions related to the most optimal

delivery of palliative care in the outpatient setting remain.

How Are Patient Referrals Determined?

Inpatient palliative care programs are increasingly utilizing referral criteria

algorithms as a means of identifying patients most in need of a specialty-level

consultation. In this approach, a consideration for palliative care consultation is

initiated based on variables such as disease (metastatic cancer), patient (severe

pain), or family (difficulty coping). However, few outpatient palliative care centers

have adopted this process. Algorithms for automatic palliative care referrals will

likely become utilized more frequently as demand grows for a finite number of

outpatient palliative care services. Indeed, ASCO issued a Provisional Clinical

Opinion recommending that patients with metastatic newly diagnosed metastatic

non-small cell lung cancer be offered concurrent palliative care along with

standard oncologic care at initial diagnosis based on the study findings of Temel

et al. 6 Other examples of criteria for triggering a palliative care referral in the

outpatient setting are shown in Table 1.


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Rabow et al surveyed 12 leading outpatient palliative care centers in the US.

These centers primarily saw cancer patients. Most of the referrals (76%) were

initiated by the oncologist, with 23% from the inpatient palliative care service.

Proximity to the oncology clinic resulted in a significantly higher referral rate, with

an 85% increase in referrals after moving to an integrated practice. Glare et

al evaluated the feasibility of a palliative care screening tool in a gastrointestinal

oncology clinic using National Comprehensive Cancer Network (NCCN) palliative

care guidelines. A one-page tool was developed, with points assigned for

performance status; the presence of metastatic disease, complications, or

serious comorbid diseases; and palliative care problems including symptoms,

distress, psychosocial concerns, or complex decision making. During a 3-week

period, the clinic nurse screened 119 with cancer. Depending on the specific

criteria used on the screening tool, 7% to 17% of patients would be eligible for a

palliative care consultation using the NCCN guidelines. The authors concluded

that prepopulating the instrument from the electronic health record and refining


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the tool to five items would capture all of those needing palliative care referral.

Use of this palliative care screening tool was recommended at the initial visit,

after hospitalization or other change in medical status, and every 6 months.

Who Pro vides the Care?

An interdisciplinary team is the most common approach to the delivery of

palliative care in the outpatient oncology setting. In a survey of 71 NCI facilities

and 71 non-NCI facilities, Hui et al reported the composition of most palliative

care teams includes physicians (80%), physician assistants (71%), social

workers (55%), nurses (47%), and other health professionals (


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In the consul ta tion m odel, patients are evaluated, and recommendations

are provided for management of the problems identified during the visit.

Suggestions to the medication regimen are offered, but the palliative care team

does not write prescriptions. The palliative care team may or may not offer

ongoing follow-up visits for patients. Unfortunately, Rabow et al found that the

consultation palliative care model resulted in a low percentage of their

recommendations being followed. Their model utilized a social worker, who

assessed the patient and consulted with the palliative care physician about the

case. Recommendations were developed and forwarded to the primary care

provider in a letter from the palliative care physician. Data indicated that palliative

care suggestions for medication changes to improve pain and depression were

rarely instituted. The authors' conclusions suggested incorporating palliative care

services earlier and using a more direct approach for management of palliative

care issues, including managing palliative care -related prescriptions.

The col laborat ive care modelis the most popular. Also known as the

integrated, embedded, or concurrent palliative care model, the palliative care

team takes the lead in managing certain aspects of care, such as symptom

management, whereas the oncologist focuses on disease-modifying therapy.

Regular communication with the oncology team is essential to provide

coordination of care, give consistent messages to patients, and avoid

redundancy. Several authors report that this approach leads to the best

outcomes. However, these models are not uniform, and services vary widely by

site. Despite complex logistical and communication issues, this model is feasible

and results in oncologist satisfaction.

In the pr imary p al liat ive care m odel, the palliative care service takes

over all aspects of care, with the APRN, physician assistant, or physician

functioning as the patient's primary care provider. Care includes diagnosis,

management, and prescriptions for an array of health issues, including the life-


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limiting disease. This model is not well described in the oncology setting, but may

be favored by patients who wish to decline antineoplastic therapy yet are not

eligible for, or are not interested in, hospice enrollment. Care may be provided in

the cancer center, a separate outpatient clinic, or in the home.

What Is the Focus and L ength of th e Pal l iat ive Care Visi t?

Descriptions of the focus and length of palliative care visits vary in the

literature depending on the referring oncologist, the oncology clinic setting, and

the palliative care providers available to see the patient. In addition, the focus of

a clinical research encounter will differ depending on the purpose of the

investigation. Von Roenn and Temel describe five domains of care to focus PC

visits: phys ical symptoms, spir i tual care, assistance with p ract ical needs,

end of l i fe care, and sup port for d ecis ion making.

In a companion article to the study of Temel et al, Jacobsen et al

described specific components of visits with metastatic NSCLC patients receiving

early outpatient palliative care. Documentation was analyzed for interactions by

seven palliative care clinicians in visits with 67 patients. The median total time

spent with patients at the initial consultation visit was 55 minutes (range, 20-120

minutes). The individual components of the visit were analyzed and showed that

the greatest time was spent in symptom management at the initial visit: symptom

management (median time, 20 minutes; range, 0-75 minutes), patient and family

coping (median time, 15 minutes; range, 0-78 minutes), and patient education

and illness understanding (median time, 10 minutes; range, 0-35 minutes).

Notably, lower QOL scores, as measured by Functional Assessment of Cancer

Therapy-General (FACT-G) scale, predicted longer visits. In another study, initial

appointments were scheduled for 90 minutes, for a combined nurse practitioner

and social worker visit. Similarly, a Canadian study found that initial visits took 90

to 120 minutes for a combined nurse-physician visit. These reports confirm that


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the provision of a palliative care encounter takes time, especially when multiple

distressing issues are present. Not addressed in these reports is the amount of

time needed to facilitate coordination of care with the oncology team. Concurrent

practices should make communication with the oncologist easier, but each visit

may require a 5- to 15-minute previsit and postvisit discussion, depending on

complexity of the issues.

What Ass essm ent Measur es Are Used in Clinical Pract ice?

The National Palliative Care Research Center references many of these

tools on their Web site. Formal assessment tools should be considered, even in

the clinical nonresearch setting, as use of a systematic assessment tool results in

a 10-fold increase in reported symptoms, compared with open-ended

questioning.

Chal lenges Related to Service Viabi l i ty and Integrat ion

Although it is clear that palliative care offers significant benefits in the

outpatient oncology setting, important barriers continue to exist. In a survey of 89

cancer center executives, the two major barriers identified when instituting

palliative care included poor re imbursement and l imi ted inst i tut ional

resources. Reimbursement for services is a key concern for the viability of

outpatient palliative care programs and will be further discussed below.

Additional challenges related to OP PC service viability are identified inTable 2.
http://www.nursingcenter.com/lnc/journalarticleprint?tid=1464615#TT3http://www.nursingcenter.com/lnc/journalarticleprint?tid=1464615#TT3http://www.nursingcenter.com/lnc/journalarticleprint?tid=1464615#TT3


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Funding Issues

By its nature, providing palliative care services is a time-intensive

endeavor and involves significant personnel costs. Funding sources in the

outpatient palliative care setting are reported as billing of third-party payers

(49%), institutional support (45%), and philanthropy (6%). In 1996, a V-code

modifier for palliative care, V66.7, was created. However, this is an unreimbursed

secondary code, rather than a primary diagnosis-related group billing code.

Use of an Advance Practice RN appears to provide cost savings due to

lower salaries compared with physicians. However, Bookbinder et al found that

Advance Practical RN billing revenue alone was not sustainable in the long term,

especially as Advance Practice RNs are reimbursed by the Centers for Medicare


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& Medicaid Services at 85% of the physician-billing rate. In addition, there was

an inability to bill for extensive use of telephonic support for management of

symptoms and distress, as these are not "allowable charges."

Thus, it appears problematic to expect outpatient palliative care to be a

self-sustaining program based on third-party reimbursement alone; facility or

philanthropic support is required for ongoing fiscal success. Indeed, palliative

care services could potentially lead to increased costs for an institution, which

may or may not be recovered through decreased frequency of Emergency

Department visits or hospitalization in a standard fee-for-service environment.

However, in the managed care setting, outpatient palliative care services may be

found to be more fiscally advantageous. The Center to Advance Palliative Care

Web site offers detailed information on billing tools and financing of palliative

care programs, especially in the inpatient setting. Seeking external community

resources may be a method to grow and sustain the palliative care program but

requires time and expertise for success.

Future Research and Trends

Outpatient palliative care is indeed "the new frontier." Study results in the

last few years have shown a significant role for outpatient palliative care in the

oncology setting. In order to provide better care to those with a diagnosis of

advanced cancer and to optimize resource utilization, palliative care involvement

needs to be moved "upstream." The National Consensus Project for Quality

Palliative Care recommends referral to palliative care at the time of a life-

threatening diagnosis. What may seem to be "early" palliative care referrals may

in fact be "just right": oncologists tend to overestimate prognosis by a factor of

three or more. Earlier palliative care intervention can reduce "overaggressive"

and inappropriate treatment in very advanced cancers, improve quality of life,


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and allow for more dignified and peaceful final days. As the field continues to

grow and develop, several research questions will emerge that may have the

capacity to influence clinical practice and guide quality care. These are

highlighted in Table 3.

TABLE 4 Future Research Questions for the Provision of Palliative Care

(PC) in the Outpatient Cancer Setting

Emergin g Trends in Ref ining th e Role of the APRN and Nurs e in

Pall iat ive Care

Several studies have demonstrated the emerging role of the Advance

Practice RN in outpatient palliative care setting. Staffing data indicate that nurses

and Advance Practice RNs together provide the majority of outpatient palliative

care services. Nurses receive extensive education in communication skills and

psychosocial-spiritual assessment. In fact, Dahlin et al suggest that patients may

feel more relaxed and informal with a palliative nurse, compared with a palliative

physician, which may result in an improved ability to voice deeply held concerns.

` Advanced practice RNs are especially well suited to this setting, as their

educational background combines the holistic approach of nursing with


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medicine's systems model. The American Society of Clinical Oncology

anticipates a workforce shortage of oncologists and other health professions by

2020 that will create a substantial challenge to ensuring access for all patients

with cancer. The APRN role thus emerges as a strategic option for providing

outpatient palliative care in the outpatient cancer setting.

Interprofessional Education and Training

The Institute of Medicine (IOM) has called for improving palliative and EOL

care for patients with cancer. This must be accomplished through an integrated,

skilled, and interprofessional work force. Most recently, the IOM report, The

Future of Nursing: Leading Change, Advancing Health, released four key

messages that aim to address the objectives set forth in the 2010 Accountable

Care Act. They include the following:

(1) nurses should practice to the full extent of their education and training;

(2) nurses should achieve higher levels of education and training through

an improved education system that promotes seamless academic

progression;

(3) nurses should be full partners, with physicians and other health

professionals, in redesigning healthcare in the US; and

(4) effective workforce planning and policy making require better data

collection and information infrastructure.

These recommendations reflect the key role nurses play in the delivery of

outpatient palliative care services. Development and promotion of palliative nurse

leaders are needed as this field expands in response to the anticipated increase

in new cancer cases over the next decades. The interdisciplinary approach to

care utilized in palliative services will be enhanced by opportunities to comingle


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with other medical disciplines during training. Such opportunities will increase

both the understanding and respect for what each discipline can offer in the

delivery of high-quality cancer care.

CONCLUSION

The vital role of outpatient palliative care in the provision of

comprehensive cancer care is increasingly acknowledged. Yet, questions remain

regarding the best model for care delivery, how to secure stable funding sources,

and how to encourage acceptance of palliative care participation by the patient,

caregiver, and oncologist. With the majority of cancer care given in the outpatient

setting, there is a critical need for growth of outpatient palliative care programs.

Additionally, the rapid development of inpatient palliative care services

nationwide will inevitably result in a more outpatient consults as patients are

discharged home and followed in the outpatient clinic. Research has shown that

palliative care and oncology are no longer mutually exclusive domains; instead, a

collaborative model can provide optimal care and save oncologists' time.

Palliative care nurses outpatient palliative care services. Ongoing education in

management of advanced illness is essential for nurses and other healthcare

providers to meet the anticipated future growth in the total number of cancer

cases.


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The benefits and risks of treatments are always of paramount importance,

and are crystallized in the patient with advanced cancer. Therapies should

always focus on quality of life, symptom control, and symptom prevention. One

must also consider that there will frequently be a secondary benefit: survival. This

is clearly an important goal of patients and families and must not be forgotten,

even in the setting of incurable disease. Unfortunately, the literature frequently

focuses exclusively on survival as an endpoint, leaving surgeons with little

information on an intervention's impact on quality of life.

A major dilemma for the practitioner caring for a patient with a terminal

cancer is that measures of success are unclear. Often the literature is a poor

guide for decision-making for this population of patients. Outcome measures

related to quality of life are not clearly defined and documented. For example,

what little focus there is on palliation in the surgical literature has been remiss in

examining appropriate quality of life outcomes. In fact, from 1990 to 1996, quality

of life measurements have been included in only 17% of reports of palliative

procedures in the surgical literature and only 12% examined pain. This is in


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contrast to the more common outcome measures of physiologic response (69%),

survival (64%), and morbidity and mortality (61%). While it is imperative to

understand these outcomes, they should not be the primary focus of palliative

procedures as they may not equate with an improvement in quality of life. In

addition, goals for palliative procedures may be broad and multifaceted. When

queried about the major goals of palliative procedures, in addition to the obvious

aims of symptom relief and pain relief, surgeons also felt that common objectives

of such procedures include maintaining independence and function, symptom

avoidance, and fewer and shorter hospitalizations. One specific example of the

lack of a defined literature related to determining success is malignant bowel

obstruction, where multiple outcomes are measured leading to no consensus for

practicing surgeons.[

Palliation is most commonly considered in the setting of an active symptom that

needs to be addressed. Less attention has been given to the prevention of

symptoms in the palliative setting, but this too is a goal of treatment, especially

palliative surgery.[8]

Many symptoms related to tumors are known to occur, but it

is less understood if or when the symptom will actually occur. Therefore, it is not

always clear when or if a procedure would be helpful. Appropriate preemptive

palliative surgery must consider prognostication related to a particular symptom,

as well as the lifespan of a patient. For example, in the setting of biliary

obstruction where a surgical bypass is attempted, one must also consider a

gastric bypass to alleviate the risk of a patient having a gastric outlet obstruction

prior to death. Another example may be with nodal dissections in the setting of

positive sentinel node mappings, especially if distant disease is noted. A nodal

dissection will have little effect on long-term survival, but this procedure may

alleviate the risk of nodal recurrence and the suffering this may cause. Therefore,

while there is frequently no clear direction for surgeons in these settings,

preemptive palliative procedures should be considered in settings where tumor-


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related morbidity can be anticipated. As always, the inherent risks of an operation

must be considered, but these are more difficult to assess when the benefits are

ultimately unknown.

With every goal of success there must be an understanding of risk. While all

treatments contain risk, this is magnified with patients who are facing the end of

life. Complications will still occur even with the most fastidious care, especially if

the patient is debilitated related to the cancer or underlying conditions. Related to

operations, morbidity may include complications not directly related to the

procedure, such as pneumonia, deep venous thrombosis, ileus, and heart failure.

With meticulous care, these can often be avoided. Related to any procedure,

pain is a major issue that must be recognized and it may persist throughout the

patient's course. Epidural, patient-controlled analgesia and local anesthetic

pumps may improve pain control and ultimate outcomes. In addition, wound

complications may always occur. For example, it has been noted that lymph

node dissections may have quite high rates of wound problems (47% for axillary

node and 71% after inguinal node dissections).[12]

Issues such as seromas and

infections may be long-term problems that take weeks to months to heal.

Patients with advanced cancers may not have time to heal these wounds.

Lymphatic leaks may necessitate procedures to isolate the offending lymphatic

vessel. As new innovations are utilized, outcomes will continue to improve for

patients. Next, acceptance of major disfigurement and lifestyle changes are most

pronounced in the immediate postoperative setting. For example, the shock of a

permanent stoma may be overwhelming for many patients. While QOL problems

related to ostomies may diminish with time,[13]this may not be possible for the

patient facing the end of life. It must be considered that symptoms may actually

worsen after a procedure. Hospital stays may be longer if complications occur.

Finally, any aggressive treatment may hasten someone's death, which is the

ultimate poor outcome.


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There are multiple issues to consider when deciding who is a candidate for

palliative interventions. These considerations may lead to a successful palliation

with limited morbidity and mortality. For example, patient nutritional status, and

specifically albumin level, is frequently an excellent tool to decide when not to

operate. Related to esophageal resections, which for many patients is a

procedure whose goal is primarily the ability to swallow, albumin along with

pulmonary function may be the best determiner of likely success.[14]

In addition, it

is important to assess the overall condition of patients, including other medical

problems and how they may affect overall risk. In all, there are no defined criteria

of what is the optimal palliative intervention, but there are multiple clues as to

which treatment is likely to result in the best (or worst) outcome.

As clinicians strive to improve their care of patients with palliative care issues,

research will also need to follow suit. Palliative care is fraught with anecdote and

opinion. There is a clear lack of evidence related to the best treatments for

palliative care problems. Therefore, we may not be delivering the best care for a

large number of patients in the USA each year. Clearly, the future for palliative

care trials mandates the full compendium of research to ensure the best

treatments are available. There is great hope that research for palliative

problems will expand in the future as there is more national and international

focus on patients facing the end of life.

There are many potential reasons for the lack of palliative care research. Many of

them are related to ethical aspects of this research. There are also innate

barriers, such as a lack of trained researchers and the challenges of subject

recruitment. For instance, many hospice facilities are more willing to increase

their involvement in palliative care research, although many institutions may not

be willing to enroll patients at this time.[82]Finally, there has been a historical lack

of funding for such research, although this may be improving with time.


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It is important to do research for patients facing the end of life and it would be

unethical not to do so. There is frequently the belief that no such research is

morally justifiable in this patient population.[83]Although others find the arguments

to this conclusion unacceptable, this still might be a prevailing belief among many

practitioners. It is imperative that the research and clinical community do not bias

themselves to palliative care research protocols. In fact, it can be argued, based

on the Declaration of Helsinki and the generally accepted ethical code of practice

in clinical research, that not offering patients at the end stage of life the

opportunity to take part in clinical research is unethical.

[84]

Ultimately, additional

importance placed on palliative care through research could lead to a greater

importance of QOL issues for clinicians.

As technology improves for the treatment of tumors for cure, this will also have

impact on palliative care. For example, the use of radiofrequency ablation

techniques for primary hepatomas and metastatic colorectal cancers also has a

role for the less common endocrine metastases. Many other technologies,

including minimally invasive techniques, may effectively treat complications

related to tumors or their care with less morbidity. As chemotherapeutics evolve,

there is likely to be an increasing role for palliative care. In addition, as

medications to avoid treatment-related symptoms improve, chemotherapy may

become a more realistic option in the palliative setting.

Palliative care is an important component of the practice for all practitioners who

care for cancer patients. It is imperative to understand all treatment options

afforded each patient. The patient, family, and treating teams must have a solid

understanding of the realistic goals of success which focus on QOL. In addition,

the chances of attaining those goals must be understood. Finally, the risks of the

treatment, including worsening of symptoms and death, must be clearly

described. Finally, follow-up is imperative to ensure treatment approaches attain


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success, or another approach should be implemented. There may also be

evolution of disease so that alternate therapies are subsequently indicated.

alliative care is any form of treatment that concentrates on reducing a patient's

symptoms, improving quality of life, and supporting patients and their families.

People with cancer often receive curative therapy (treatment to eliminate the

disease) and treatment to ease symptoms at the same time.

Palliative care is given as early as possible in the cancer treatment process and

continues through all stages of illness, regardless of whether a cure is the

expected outcome. If you decide to stop disease-directed treatment, palliative

care focuses on managing the symptoms caused by cancer.

Caregiving at the end of life involves much more than the practical tasks of helping a person with

cancer. Its also about letting your loved one know, through your words and actions, of your love

and commitment. Its about promoting an atmosphere of peaceful acceptance. Your role as a

caregiver is a challenging one. You will need support, too, as you do the important work of

comforting and supporting your loved one.

Here are some things to consider when you are caring for

someone who is near the end of life:

Create a peaceful atmosphere. Sometimes words are unnecessary. Play soft music or light scented

candles (but avoid open flames if your loved one is using oxygen). Keep your loved one warm,

clean, and comfortable. Gentle physical touch and reassurance can be powerful.

Expect an altered appetite. Providing food and drink is a basic way of showing that we care for

someone. As cancer progresses, however, your loved ones need for food and drink will likely

diminish. He or she may decline food or be unable to eat or drink. Be aware that a seriously ill

person can choke on food or fluid. Talk with your health care team about the best way to respond

to changes in your loved ones appetite.

Understand silences.Keep in mind that your loved ones voice may weaken. He or she may talk

little and avoid long conversations. He or she may also seem disengaged from family, friends,

and everyday activities. This is normal as the end of life nears. Even if your loved one does not

seem alert, be aware that he or she likely can still hear what is going on nearby.

Be a good listener. At times, your loved one may want to talk. It is important to let him or her speak

freely. Listening may not be easy. Your loved one may speak of sadness and fear of pain or

death. He or she may fear being separated from family or anxious about unfinished tasks. Your

presence and courage to listen will lessen your loved ones anxiety and fear.

Attend to spiritual needs. People at the end of life often have questions about death, the meaning

of life, guilt and forgiveness, the afterlife, and their relationship with God or a spiritual entity. Attimes, your loved one may feel angry or abandoned by his or her belief system. At other times, he

or she may embrace faith more intensely than before. Be patient and understanding if

disagreements arise. Many people find support from a pastor or clergy person helpful in coping

with these issues.

Dont forget humor. If your loved one has always enjoyed humor, resist the idea that you need to

be somber or solemn around him or her now.


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Look after yourself. You may see your loved one going through changes that are stressful and

difficult for both of you. Being a caregiver requires strength and stamina. You need to care for

yourself so that you can give your loved one the support and care that he or she needs. Try to get

plenty of rest. Ask friends or family members to help out from time to time so that you can take a

break.

Get help with practical tasks. A hospice nurse, visiting nurse, or home health aide can assist withthe practical aspects of caring for your loved one.

Seek emotional support. There are many sources of support for caregivers. For example,

CancerCares professional oncology social workers provide free counseling and support groups

for caregivers. Our services are offered face-to-face, as well as over the telephone and online for

those unable to travel to appointments or meetings.

As you near the end of your life focus will shift to your quality oflife.

Quality of life is about giving you support to maintain and enjoy

everyday living. Its about you being at the centre of your careand focuses on your level of comfort, enjoyment and ability tocontinue daily activities and what affects you.

It may sometimes mean having to change expectations and

make choices based on what is available and acceptable to you.

Documents

Palliative Care in the Outpatient Cancer Center