Early Palliative Care in Advanced Cancer: Who and When?

Kristin Jenkins

November 15, 2017

Mounting evidence of the benefits of early referral to specialist palliative care for patients with advanced cancer is putting pressure on oncologists to consider this option, but there is a lack of clarity on which patients should be referred, and when.

With the aim of offering guidance as to who and when, a team of experts has developed an international consensus on referral criteria.

This document, published in the Lancet Oncology, was developed after consultation with 60 outpatient palliative care specialists from North America, Europe, Asia, and Australia. It gives details of 11 major and 36 minor referral criteria that 70% or more of the experts agreed upon.

These criteria should help clinicians to identify patients suitable for outpatient specialty palliative care, the authors write. The group was led by David Hui, MD, of the University of Texas MD Anderson Cancer Center, Houston.

"Our list of consensus criteria represents a key step towards standardization of the referral process, which is presently haphazard," they comment.

These criteria should serve as guiding principles, and should augment rather than replace clinical judgment. Dr David Hui and colleagues

"Importantly, these criteria should serve as guiding principles, and should augment rather than replace clinical judgment," they add.

"An oncologist might decide to refer a patient to palliative care at any time, even if this patient does not meet any of the criteria," the authors emphasize.

Outpatient palliative care services play a key role in facilitating early access for cancer patients who are ambulatory, the researchers say. They note that a study that they conducted in 2014 showed greater improvement for end-of-life outcomes when palliative care was delivered on an outpatient rather than an inpatient basis.

Other studies suggest that when outpatient specialty palliative care is delivered concurrently with routine oncologic care, symptom management, pain control, and quality of life are significantly improved, they point out. Patient satisfaction is also improved, and end-of-life discussions can reduce the risk for aggressive, crisis-based measures.

As previously reported by Medscape Medical News, the American Society for Clinical Oncology (ASCO) has recommended that palliative care be considered early in the disease course, concurrent with active treatment, for patients with metastatic cancer, those with a high burden of symptoms, or those with unmet physical or psychosocial needs.

Palliative care should start as soon as a patient's cancer becomes advanced or within 8 weeks of diagnosis in newly diagnosed patients with advanced cancer, according to ASCO.

"For palliative care to be effective, patients need to be referred in a timely fashion," Dr Hui confirmed. "It is much more difficult to improve patient outcomes when they are referred late in the disease trajectory," he pointed out.

"Several research groups, including ours, are in the process of examining how to use these standardized criteria to optimize referral," he said, referring to the international consensus document.

"The applicability of referral criteria for specialist palliative care seems to be dependent on the quality and availability of palliative care expertise in the team of oncologists and oncology nurses at each institution," commented Florian Strasser, MD, who is a coauthor of the consensus document. Dr Strasser is associate professor of supportive and palliative oncology and is head of oncological palliative medicine at Cantonal Hospital in St. Gallen, Switzerland.

Oncology literacy and competence is crucial for specialist palliative care teams, which ideally should comprise clinicians with board certification in both palliative care and medical oncology, Dr Strasser told Medscape Medical News.

When approached for comment, Yael Schenker, MD, associate professor of medicine and director of palliative care research at the University of Pittsburgh, in Pennsylvania, emphasized that "these criteria should augment rather than replace clinical judgement, as appropriately noted by Dr Hui et al."

Important challenges remain, she pointed out, including how to implement referral criteria in clinical practice and how to tailor these criteria to various situations on the basis of practice type and palliative care availability. "Another potential challenge that has not received as much attention is the reluctance of some patients to see additional specialists," she noted.

Also asked to comment, Camilla Zimmerman, MD, PhD, head of the Division of Palliative Care at the Princess Margaret Cancer Center and the University Health Network, in Toronto, Canada, said the best time for a palliative care consultation is immediately following diagnosis of advanced cancer.

"Every patient with a life-threatening illness can benefit from referral to palliative care," said Dr Zimmerman, who is professor of medicine at the University of Toronto.

"More clinicians need to recognize that palliative care is about improving quality of life rather than just the quality of death."

More clinicians need to recognize that palliative care is about improving quality of life rather than just the quality of death. Dr Camilla Zimmerman

Details of the Referral Criteria

To develop the international consensus on referral criteria, Dr Hui and colleagues conducted a Delphi survey of 60 international palliative care specialists. About half of those surveyed (54%) were trained in both palliative care and oncology. For those trained in palliative care, the median number of years of experience was 10; for those trained in oncology, the median number of years of experience was 12.

Given the diverse professional and cultural backgrounds of the group, the consensus "suggests that some universal patient phenotypes could be appropriate for outpatient palliative care, irrespective of health-care system or boundaries," the researchers say.

The study focused on referral of patients with advanced cancer who were undergoing treatment at secondary or tertiary care hospitals that had a multidisciplinary palliative care team. Potential referral criteria were developed using 20 unique categories that had been previously identified by Dr Hui and colleagues.

After three rounds of Delphi surveys conducted between Septemper 28, 2015, and February 16, 2016, six categories of criteria for referral were commonly cited. They included two time-based criteria, such as cancer trajectory and prognosis, and four needs-based criteria, including physical symptoms, performance status, end-of-life care planning, and psychosocial distress.

Consensus as to the most appropriate timing for referral to outpatient palliative care was that it take place within 3 months of a diagnosis of advanced cancer for patients whose life expectancy was 1 year or less and who had progressive disease after undergoing two lines of palliative systemic therapy.

Consensus for referral to outpatient palliative care on the basis of major needs-based criteria include the following:

  • Severe physical symptoms, such as pain, dyspnea, or nausea the severity of which were scored 7 to 10 on a 10-point scale;

  • Severe emotional symptoms, such as depression or anxiety, with severity scores of 7 to 10 on a 10-point scale;

  • A request for hastened death;

  • Spiritual or existential crisis;

  • The need for assistance with decision making or care planning;

  • A request by the patient for referral;

  • Delirium;

  • Spinal cord compression or cauda equina; and

  • Brain or leptomeningeal metastases.

"The presence of any major criterion alone could be sufficient to trigger an outpatient palliative-care referral," say Dr Hui and colleagues. "With further validation, these criteria could be useful as triggers to initiate referral of patients with cancer to a specialist outpatient palliative care clinic."

A median score of 8 for these major criteria indicate that the criteria could be useful for routine screening in oncology practice, members of the expert panel said. The criteria could also facilitate outpatient palliative care referral at their own institution and in their own country, they noted.

The identification of 36 minor criteria raised the question of whether a score should be created to customize the referral process within each institution. More research is needed to determine and validate this.

Standardizing Palliative Care Referral

To standardize palliative care referral, four key elements are needed, Dr Hui explained.

Outpatient palliative care teams must be adequately staffed, and oncology clinics must routinely conduct systematic screening of patient care needs, he said. In addition, standardized criteria for referral, such as those proposed by the international consensus, should be reviewed and revised at the institutional level, and a system put in place to trigger a palliative care referral when criteria are met.

Several projects are currently exploring approaches to the screening of patients, noted coauthor Dr Strasser. He added that in this regard, the 11 major criteria are good. Once a trained clinician has conducted a needs assessment, concrete palliative interventions "with real-time availability" can be discussed with attending oncologists, he suggested.

Clinicians' attitudes toward palliative care can vary widely, however, and some attitudes can act as a barrier to referral. "Whether standardized referral criteria can help to reduce this variability would be useful to establish," the study authors say.

Persistent misconceptions among patients, families, and clinicians about the role of palliative care vis-a-vis standard oncologic care need to be addressed, Dr Schenker agreed.

"When a clinician says, 'You're not ready for palliative care yet, we're still fighting,' it's an example of the kind of misconceptions that still exist about what palliative care does," added Dr Zimmerman.

"We've established that tertiary palliative care is helpful early on in the course of life-threatening illness to deal with pain control, management of depression and anxiety, and avoiding overly aggressive care at the end of life," Dr Zimmerman told Medscape Medical News. "Patients may not want to be labeled as someone who is dying, but they may want to engage in any form of treatment that will extend their life."

All clinicians should have knowledge of primary palliative care, but the initial conversation about palliative care ― what it is and how the patient can benefit ― should come from the oncologist, emphasized Dr Zimmerman. "The more comfortable that oncologists are at having this conversation, the better."

The more comfortable that oncologists are at having this conversation, the better. Dr Camilla Zimmerman

Dr Zimmerman cited results from a randomized trial that she was involved with in 2016 in which early palliative care was compared with standard oncologic care. That study found that patients perceived oncologists and palliative care physicians as having distinctly different roles but that they nonetheless worked well together to provide optimal cancer care. Visits with the oncologist were seen as structured and physician-led, whereas palliative care visits were seen as more fluid, less time-constrained, and patient-led.

"Participants perceived the respective roles of their oncologist and palliative care physician as discrete, important, and complementary for the provision of excellent cancer care," Dr Zimmerman and colleagues concluded.

Although the percentage of palliative care referrals is increasing "exponentially," Dr Zimmerman estimates that only 30% of patients who die of cancer in Canadian centers are referred for palliative care.

It's still a contentious issue. Dr Camilla Zimmerman

"For me, it's still a contentious issue," she said. "We still get referrals for patients who die before they get to us. We don't know if the patient had a good death or not, if they had symptoms or if they were in a lot of pain. This is not a good thing."

Sometimes, a late referral results in crisis intervention at the eleventh hour, in which the patient is referred to hospital while experiencing escalating pain and being accompanied by distressed and unprepared family members.

"It takes a lot of time and energy to reverse a situation that has spiralled out of control because the patient is in pain and the family is upset," Dr Zimmerman said. "We could have a lot more capacity if we didn't get so many crisis referrals, if the patient had been referred 6 months earlier."

Giving a quantitive value to symptoms would also be helpful, she added.

"Currently, prognostic scores are not often used because they can be cumbersome and difficult to interpret," Dr Hui toldMedscape Medical News. Web-based prognostic calculators such as www.predictsurvival.com "may help clinicians to apply a validated prognostic model in the advanced cancer setting," he suggested.

Demand for Palliative Services Increasing

The demand for palliative care services is expected to increase significantly during the next decade, owing to the larger number of patients with advanced cancer who are living longer. In addition, more oncologists are referring a greater proportion of their patients earlier in the disease trajectory, said Dr Hui.

To address this, more palliative care specialists will need to be trained, and more primary care physicians and oncologists will need to learn how to provide basic palliative care, he said.

In Europe, the ESMO [European Society for Medical Oncology] Designated Centers of Integrated Oncology and Palliative Care accreditation program is actively demonstrating how integration can be fostered and grown internationally, said Dr Strasser.

Initiated in 2003, this incentive program awards special recognition to cancer centers that achieve a high standard of integration of medical oncology and palliative care.

In 2016, more than a dozen centers in the United States, Europe, India, Russia, and Australia earned accreditation for making comprehensive services in supportive and palliative care part of routine care.

"Capacity is another huge issue" when it comes to providing specialized palliative care for patients with advanced cancer, noted Dr Zimmerman. There are workforce shortages in palliative care, as well as lack of access to outpatient specialty palliative care, said Dr Schenker.

"We simply do not have enough specialty palliative care clinicians to meet the needs identified in cancer alone, not to mention other types of serious illness," Dr Schenker told Medscape Medical News. "This is particularly true in community oncology practices, where the vast majority of patients with cancer in the US receive treatment."

Support for specialty palliative care training for clinicians needs to continue, and ways to improve access to palliative care on a population health level have to be identified, she said.

In outlying rural areas, primary care physicians will need to be educated on how to provide palliative care for patients with life-threatening illness, agreed Dr Zimmerman.

The next generation of studies will establish which patients should be referred to a palliative care specialist and which patients can be cared for by a primary care physician trained in palliative care, Dr Zimmerman commented. "We don't refer every patient with hypertension to a cardiologist," she pointed out.

The study was supported by the Multinational Association of Supportive Care in Cancer. Dr Hui, Dr Strasser, study coauthors, Dr Zimmerman, and Dr Schenker have disclosed no relevant financial relaitonships.

Lancet Oncol. 2016;17:e552-e559. Abstract

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