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Early palliative care referral for the patient who has terminal cancer

Parris, Stephanie D. PA-C

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Journal of the American Academy of PAs: April 2013 - Volume 26 - Issue 4 - p 34-38

Cancer is the second most common cause of death in the United States.1 Over the past 2 decades, PAs have become an integral part of the oncology team, primarily because of the time constraints placed on physicians and the need for additional competent medical providers as the number of patients with cancer continues to rise each year.

In its annual Cancer Facts and Figures report, the American Cancer Society estimates that 1,660,290 new cases of cancer will be diagnosed in 2013.1 This is a modest estimate, as some cancers are not required to be reported. Approximately 580,350 Americans are expected to die of cancer in 2013, almost 1,600 people a day.1 In turn, the Association of American Medical Colleges predicts a shortage of 124,000 physicians by 2025.2 This shortage, along with the rise in new cancer cases, the anticipated end-of-life (EOL) care needs of the large numbers of aging baby boomers demanding high level patient-centered care, and the instability of health care reform, will place a heavy demand on the need for PAs who are competent in palliative care (PC) and oncology. PAs will be valuable in PC because of the support and comprehensive medical knowledge they can offer patients. Terminally ill patients require physical, medical, spiritual, and psychosocial management, and PAs bring a wealth of knowledge and caring to the discipline of PC and the care of the terminally ill. In addition, PAs provide the time and personal skills to help terminal patients navigate the complex path that lies ahead. PAs are trained in the medical aspects of pain relief and the use of medications that relieve anxiety; therefore, they are exceptionally qualified to assist patients to live as well as they can even in the shadow of death. More important, PAs provide the time needed to listen to patient concerns. As PC is also dedicated to improving quality of life (QOL) in terminally ill patients at the EOL, the relationship between PAs and PC in providing impeccable care to terminally ill patients is essential.


At initial presentation, patients with an eventual diagnosis of cancer may be symptomatic or asymptomatic, or they may have a mass or nodule found incidentally on a scan during investigation of a different medical problem. Whatever the initial concern, a trained medical provider, family member, or patient found an anomaly and an investigation ensued.

Various diagnostic tools and studies aid in identifying cancer. PAs are instrumental in explaining the meaning of the studies, aiding patients in the acceptance of their diagnosis by explaining the disease course, and offering support and consistency during this difficult transition. PAs currently practicing in oncology and PC are ideally situated to be ambassadors of health care by ensuring that it involves physical, psychosocial, and spiritual aspects.



Trained in the standard care of oncology patients, the medical aspect of pain relief, and use of medications that relieve anxiety, oncology PAs are qualified to help patients live as well as they can in spite of their illness. PAs assist patients in acknowledging their diagnosis by empowering them to embrace their emotions and to know their emotions are absolutely normal and validated. Discovering where the patient is in Kübler-Ross' five stages of grief-denial, anger, depression, bargaining, and acceptance-can be used as an assessment tool to initiate a dialogue and to establish a rapport with patients. PAs can explain how early PC aids in positively affecting the disease course during the first four stages and how it allows patients to maximize their QOL as they work toward acceptance of their diagnosis and prognosis. Patients are empowered to take control of their health, institute positive changes in their lives, and make informed decisions about their health care.

In the article “Taking Care of the Cancer Survivor,” Emanuel and colleagues offer a number of principles for providers and patients that are intended to help facilitate care and to establish realistic goals and expectations. Among the principles laid out for providers are to listen to the patient's concerns, always tell patients the truth, offer all applicable options for adequate symptom management and expert palliative care, and provide information on any potentially helpful new advances. For their part, patients are expected to tell the clinician what and how much information they need to know, be actively involved (along with their significant others) in all appropriate decision making around their care, know that they always have something to give back (even if it is to teach the next generation how to die), remember that life is a precious and fleeting gift that needs to be lived to the fullest regardless of the circumstances, and be assured that they will always get the support they need to fulfill their side of the bargain.3 This informal agreement is the first step in establishing rapport between clinician and patient and establishes a basis of trust and perceived expectations on the patient's part. Patients begin to trust that the PA will do everything medically and humanely possible to aid in their care.

As this is a difficult transition for patients, the treatment process requires a multidisciplinary approach and more importantly allows for the incorporation of PC in the care of the patient. When patients are introduced to a health care discipline that caters primarily to their special set of needs, they are motivated to utilize PC, begin to work through the grief process, and become empowered to take part in informed medical decisions.


  • PAs are essential in advocating for patient's health care in oncology and early palliative care (PC) referral.
  • Providers should include early PC referral in the case of terminally ill patients.
  • To ensure effective patient care, barriers that deter early referral to PC must be overcome.
  • PC is a specialty that can assist in pain management, psychosocial problems, and acceptance of diagnosis in the terminally ill patient.


The patient officially becomes interwoven into a multidisciplinary team, both medical and nonmedical, with oncology PAs being among the first postreferral medical responders to be involved in the patient's care. Each medical subspecialty is consulted depending on the severity of the disease and treatment required. Treatment is based on evidencebased medicine and guidelines set forth by the National Comprehensive Cancer Network (NCCN) and available on its Web site. Auxiliary support is needed to deal with psychosocial and spiritual issues. This support is provided by social workers, clergymen, community- or hospital-based groups, families, nonprofit organizations, and PC.


Cicely Saunders, an English physician, is considered the founder of modern hospice. The hospice movement was born out of a nursing care plan to improve humane treatment of the terminally ill patient. The philosophy that Saunders helped develop essentially states that terminally ill patients should be treated with dignity and that their care must include their families, a multidisciplinary medical team, and nonmedical personnel.4 PC, which was derived from hospice to provide symptom management in patients who are terminally ill, has become instrumental in the physically and psychosocially centered care of the terminally ill patient. In words that have been attributed to two oncologists, Neil MacDonald and Eduardo Bruera, the World Health Organization (WHO) provides the following definition:

Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.5,6

PC specialists are medical internists who are trained in emotional and psychosocial behavior and are invaluable in assisting patients and providers dealing with difficult spiritual and psychosocial issues. Early referral to PC will provide patients with methods to manage their symptoms, come to terms with their prognosis, live the rest of their lives humanely, and die with dignity. According to Grant and colleagues, improved palliative and EOL care includes institutional changes, educational activities for the variety of disciplines involved in care, research initiatives to improve care, and the development of national guidelines for assessing quality cancer care.7 The importance of PC lies in its history and the change in medical care as patients are electing to die at home. To allow for the care of the dying patient at home, PC is supported by “navigators” (lay nurses, social workers, home health agencies) who assist cancer patients in moving through diagnosis, treatment, and follow-up care.7 Medical, spiritual, and psychosocial care can now be provided at home under the direction of PC; this is important, as some patients feel too ill to come to a hospital. Ensuring excellent care requires that barriers to early PC be overcome.


Finances Terminal illness is often accompanied by loss of employment and medical benefits. Patients and providers are not always aware of the various social or government financial resources that may be available. Social workers and nonprofit organizations, such as the National Hospice and Palliative Care Organization and the American Cancer Society, have become invaluable sources of information to guide patients, their families, and providers to information about cancer and financial resources. Clinical guidelines to understanding palliative care and hospice needs of patients can provide insight to clinicians as they prepare to identify, plan, and treat patients with serious illnesses. Clinical algorithms can be valuable to PAs when determining care for patients with serious illnesses prior to identifying which financial resources will best benefit each patient. The American Cancer Society provides free information to the patient, while information from the National Hospice and Palliative Care Organization is available only to members who have completed an application and paid a fee.8

Buck reports that Medicare part B is underutilized among terminally ill patients.4 The reason for such underutilization is unclear. Patients may not know about the availability of this resource, or they may be unaware of their eligibility once they are diagnosed with a terminal illness. The Medicare hospice benefit established in 1982 was the beginning of government financial involvement in PC.4 This involvement evolved because hospice care was a more cost-effective method of health care than standard medical care. According to Buck, Medicare spending for hospice was greater than $10 billion in 2007, and spending was expected to more than double over the ensuing 10 years.4 In a linear, nonrandomized study of inpatient PC programs at eight US hospitals from 2002 to 2004, Morrison and colleagues reported an estimated saving of $1,696 in direct costs per admission (P = .004) and $279 in direct costs per day (P<.001), with a significant cost reduction in laboratory and intensive care costs for patients discharged alive. Patients who died experienced savings of $4,908 (P = .003) in direct costs per admission, and $374 (P <.001) in direct costs per day.9 In addition, the authors note that similar cost savings were seen in other small studies, including two studies completed by the Veterans Administration. Morrison and colleagues also state that the estimated costs for patients who did not receive PC were not significantly different than those for patients receiving “usual” care. Although the study controlled for bias and confounding by using various designs, the authors suggest that additional randomized trials are needed.9 In her 2008 testimony before the US Senate Special Committee on Aging, Meier reported that compared with standard hospital care, PC services can reduce costs,10 a statement supported by Morrison and colleagues in a 2011 study.11

Stigma The second barrier to PC is its negative association with hospice care and treatment of patients who are dying. An anonymous, Web-based, random survey suggests that the term palliative care has a stigma association with hospice that deters providers from referring patients. Two hundred medical providers were asked if they would refer patients to early palliative care if the name were changed to supportive care. The 140 respondents included 74 PAs and advance practice nurses and 66 medical oncologists. The results showed that 57% of respondents preferred the terminology supportive care compared to the 19% who preferred palliative care. This was a significant difference (P <.0001).12 The group in favor of the name change was more inclined to refer patients to an entity identified as supportive care if patients were on active treatment or deemed treatable or if they had a chronic illness. These responders felt that the name supportive care gives patients and providers hope for recovery and decreases stress-related name associations.12

In contrast, an editorial entitled “Stigma Associated with ‘Palliative Care’: Getting Around It or Over It,” Cherny writes that the title used to distinguish PC from hospice care has no effect. The name of the specialty does not negate the care that should be provided to this population of patients. They should be treated clinically, ethically, and humanely.6 Medical providers are sworn to do no harm, and providers must continue to put the needs of their patients first. Whether the specialty is called PC or supportive care, the role and purpose are more important than the name. Honesty, empathy, and the ability to overcome personal biases may be the solution to overcoming the name stigma associated with early PC referral and to providing staff and community education on the similarities and differences between hospice and PC. The National Palliative Care and Hospice Care organization Web site provides patients with valuable information on both services.

Spirituality The third obstacle to early PC referral is the difficulty of incorporating the concepts of spirituality and religion into care and the awkwardness that this topic creates for patients and providers. Edwards and colleagues performed a qualitative meta-study on spirituality using Tanyi's definition that spirituality is a personal search for the meaning or the purpose of life that may or may not include religion, whereas religion is more about systems or boundaries.13 Eleven patient articles and eight health care provider articles were included in this systematic review, with data from 178 patients and 116 health care providers. This study reveals the importance and meaning of spirituality to patients but also notes that providers need to recognize their own vulnerabilities when dealing with patients' spiritual concepts, as these, too, can be a barrier to early referral.14 PC specialists are able to provide guidelines to patient care and facilitate humane treatment of patients who are forced to deal with pain, financial debt, psychosocial demise, and ultimately their own death, as well as to assist each party in spiritual and nonspiritual comforts.

In a cohort study, Mack and colleagues surveyed 2,155 patients with stage IV lung or colorectal cancer between 2003 and 2005.15 National guidelines recommend that physicians discuss EOL care with terminal patients whose life expectancy is less than 1 year.16 The survey data revealed that discussion of EOL care took place at a median 33 days prior to death; this late discussion decreases the opportunity to provide and optimize effective care of patients.15 PC can assist in overcoming personal biases and fears when discussing death concepts.


The need for early PC referral and the PA's role in PC is evident, but providers and patients must overcome the barriers that prevent timely referrals and care of terminally ill patients. Dy and colleagues state that different interventions of palliative care can improve patient satisfaction, but satisfaction is not included in the majority of studies as an outcome of PC.17 Additional research is needed to compare satisfaction as an outcome to PC.18 In order to provide evidence-based data on patient satisfaction with PC, providers need to increase appropriate and timely referrals to this specialty.

Physician Assistants in Hospice and Palliative Medicine (PAHPM) is a new nonprofit organization affiliated with the AAPA. PAHPM educates PAs in the field of PC and hospice and advocates for PAs' rights in hospice care. At present, PAHPM is advocating for the Medicare Hospice Care Act, HR 3831, which allows PAs to provide care to Medicare beneficiaries. Information is available at the organization's Web site. The need for PAs in this subspecialty is critical. Together we are a formidable team.


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