A Comprehensive Look at Palliative Care: What Every Fellow Should Understand

About the Author

Kathryn Bollin, MD, is a hematology and oncology fellow

at Scripps Clinic.

A world of personal discovery often opens up during medical training. While in medical school, we endure high-volume, intensely pressured learning and discover an inner work ethic previously untapped. In residency, we learn to “practice” medicine and discover a new confidence that only emerges from real experience. For those of us who embark on fellowship training, this is where we settle in to learn the field of medicine to which our passion has delivered us.

This is akin to entering the cockpit after years of flight training on the ground. The first few weeks of fellowship are spent in awe of actually being chosen, knowing this is where we will finally get to experience the thrill of flight. As weeks progress, we sputter through a few rough takeoffs and landings, some so discombobulating that we forget the excitement we felt only weeks before.

About 6 months into fellowship we begin to soar, still guided in flight by peers and mentors. The thrill returns at this point and we find a rhythm. This is important since without a rhythmic undertone to the intensity of our days, the winds are choppy and the flight is chaotic.

Making a New Friend

As my first year of fellowship concludes, I feel like I’ve got rhythm. And I know it’s in large part due to the solid flight crew keeping me in time.While recently rotating as the “inpatient” fellow, getting to know my crew has helped me immensely. I found this new role to be one of the most draining of my entire medical training. The hours were long and food seemed scarce, but comfort came from my supportive team and family. If not for them, this would have been a “What have I gotten myself into” month from hell. Instead, I managed to learn and even get a thrill from practicing cancer medicine from a new perspective.

As is often the case with cancer patients in a hospital, most of mine were nearing the end stages of their disease and life. Some patients entered this phase after years of struggle. However, the majority of them were newly diagnosed, diffusely metastatic, and far too young. In 4 short weeks, there were at least a dozen patients with whom I conducted a weighty conversation about their advanced, soon to be terminal, cancer.

Palliative Care: Background

Each discussion, patient, and family pulled at a separate heartstring. Upon meeting a patient for the first time, I would brace myself for this new role as the stoker of fear and mortality rather than the gatekeeper to hope. And each time, I called upon our palliative care nurse practitioner to help me guide my patients in their new reality. She was the copilot I needed to help provide care for these patients for whom cure was impossible and palliation essential.Palliative care is a relatively new field of medicine, but one that has grown quickly for a multitude of reasons. The term “palliative care” was first used in the 1970s by Dr Balfour Mount, who became the father of the palliative care movement in North America. Dr Mount, a Canadian urologic cancer specialist, leveraged the work of Elizabeth Kubler Ross and Dame Cicely Saunders. These women studied the care of the dying in North America and helped influence palliative care’s incorporation into modern practice through hospice care and the analysis of patients’ distinct physical, emotional, and psychosocial needs.¹

Integrating Palliative Care Into Oncology

Palliative care is now a globally established medical specialty aimed at relieving suffering. The World Health Organization defines palliative care as “an approach that improves 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.”² In my experience, a conceptual definition often used by practitioners is that palliative care is a mechanism for “an extra layer of support.”Not all doctors work with dying patients. Almost without exception, in hematology and oncology, we do. Our relationships with our patients are complex. They are sometimes very brief and sometimes long term. Our conversations with patients are complicated and we rarely know in advance how the information we plan to convey will be interpreted.

In our clinics, we dance between exam rooms—in one, performing as the gladiator charged to annihilate the eternal enemy of cancer, and in the next, as the wise healer, charged to embrace, not cure, the deepest wounds at the heart of the human condition.

After attempting these roles as a new fellow, many of us come to recognize the impossibility of mastering these roles in the same way we mastered taking test after endless test in medical school, and managed hypertension, diabetes, and infections ad nauseam in residency—which is to say, competently and alone.

It was during my recent rotation in the inpatient oncology service that I quickly became aware of the impossibility of performing these roles alone. After nearly a dozen consults to palliative care, I got it.

Their work is the fulcrum of my balancing act. With their help, I could aim to cure, heal, and comfort with less inner conflict. But more importantly, vulnerable patients could get the full attention of mind, body, and soul they deserved.

The results of a landmark phase III randomized control trial demonstrating this benefit for patients with advanced non-small cell lung cancer who received early palliative care referral were published in 2010. While the primary end point demonstrated a change in quality of life at 12 weeks favoring early referral to palliative care in addition to standard oncology care, rather than standard oncology care alone, several other interesting and statistically significant findings were made. Patients receiving palliative care understood their prognosis and incurability more clearly, opted for less aggressive end of life care, and chose less aggressive treatment at the end-of-life. These patients also survived 2.7 months longer than those in the non—palliative care group.³

In the American Society of Clinical Oncology (ASCO) Provisional Clinical Opinion (PCO) article, published in 2012, other trials were referenced in their call to arms for integrating palliative care into standard oncology care. Several older trials that found a lack of significant benefit in early palliative care were pronounced to lack scientific rigor. More recent trials, however, consistently showed fewer dollars spent on end-of-life care and greater completion of advance directives. In fact, several trials revealed that early palliative care referral results in fewer emergency department visits, better quality of life for patients and caregivers, and better communication. While ASCO’s PCO favoring early palliative care referral for any patient with metastatic cancer and/or high symptom burden reflects expert consensus based on studies concluded in 2012, the report highlighted these priorities for continued research:⁴

• The optimal timing and venue for provision of palliative care (inpatient, outpatient/community)
• Evidence-based reimbursement models to support palliative care provision
• Which components of palliative care have an impact
• Interventions in other diseases besides lung cancer
• The impact of palliative care across the continuum of care, especially during the delivery of antitumor therapy

When to Engage Palliative Care

There is no timeline that rules when to engage palliative care for patients. All patients need support when faced with illness, and establishing that support early on can prevent angst when emotional and physical needs become volcanic.

Table. NCCN Palliative Care Guidelines — Version 1.2015⁶

Screening For Palliative Care Referral

Uncontrolled symptoms

Moderate to severe distress related to cancer diagnosis and cancer therapy

Serious comorbid physical and psychosocial conditions

Life expectancy ≤6 months

Metastatic solid tumors

Patient/family concerns about course of disease and decision making

Patient/family requests for palliative care

Adapted from National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology: palliative care. Version 1.2015.

Access to Palliative Care

Often, clinicians begin palliative care too late, when symptoms are severe and end-of-life is measured in days to weeks.⁵ The National Comprehensive Cancer Network (NCCN) has published guidelines for integrating palliative care with oncology care. These guidelines are categorized into screening, assessment, interventions, reassessment, and after-death interventions. Patients who fulfill any of the 7 screening criteria (see Table) are recommended for referral to palliative care.⁶At this time in my training/career, palliative care is a phone call away. Access may not be so easy for those at smaller institutions or in community private practices. A survey of 101 cancer centers in the United States published in 2010 showed that despite the value of palliative care, access had not yet become universal. This survey revealed that National Cancer Institute (NCI) centers were significantly more likely to have a palliative care program, at least 1 palliative care physician, an inpatient palliative care consultation team, and an outpatient palliative care clinic. Poor reimbursement and limited institutional resources were cited by survey participants to be the factors limiting access to palliative care.⁵ Compounding the problem of the lack of resources to fund palliative care services are the estimated shortage of palliative care practitioners (6000-18,000) and the limited number of available training programs.⁷

Models of Palliative Care

Among the benefits demonstrated in studies of palliative care, the financial savings at end of life are certain to effect changes in practice for end-of-life cancer care. One bill addressing both the shortages and the financial savings, the Palliative Care and Hospice Education and Training Act, has been proposed.⁸Various models of palliative care have been designed and can be applied to cancer centers based on available resources. Bruera et al defined 3 models: the solo practice model, the congress approach, and the integrated care model. In each, the layers of integrated care increased stepwise—from the oncologist being the sole practitioner addressing patients’ palliative needs to the integrated model involving multiple medical specialties with the palliative specialist coordinating care.⁹

Fellowship and Beyond: With Palliative Care at My Side

Participants in a Leadership Development Program called into existence by ASCO have sought to identify the critical elements of a palliative care service model. Their recommendations for implementing a dynamic, real-timemodel of patient-centered care were crafted with an understanding of the wide variety of established cancer care models. In this program, a symptom assessment tool of various levels of sophistication was used to capture patients appropriate for palliative care referral. Results of this assessment would then trigger the clinician to address symptoms and/or make a referral to palliative care.¹⁰ In fact, tools to trigger an algorithmic approach to provide evidence-based care for supportive management interventions are already being utilized in practice.¹¹Medical training is a whirlwind of knowledge, struggles, accomplishments, and personal growth. Hematology/oncology fellowship training adds to this with layers of complex human interactions unique to the field. Mastering the demands of this profession requires mastering an ability to enlist the skills of others at the right time. Enlisting palliative care at the right time is a critical step that must be taken by any team striving to provide expert cancer care.

References:

1. The Ottawa Citizen. A moral force: the story of Dr. Balfour Mount. Canada.com website. www.canada.com/ottawacitizen/story.html?id=896d005a-fedd-4f50-a2d9-83a95fc56464. Published April 25, 2005. Accessed April 29, 2015.
2. Cancer: WHO definition of palliative care. World Health Organization website. www.who.int/cancer/palliative/definition/en. Accessed April 29, 2015.
3. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733-742.
4. Smith TJ, Temin S, Alesi ER, et al. American Society of Clinical Oncology provisional clinical opinion: the integration of palliative care into standard oncology care. J Clin Oncol. 2012;30(8):880-887.
5. Hui D, Elsayem A, De la Cruz M, et al. Availability and integration of palliative care at US cancer centers. JAMA. 2010;303(11):1054-1061.
6. NCCN Clinical Practice Guidelines in Oncology: palliative care: version 1.2015. National Comprehensive Cancer Network website. www.nccn.org. Accessed April 29, 2015.
7. Lupu D; American Academy of Hospice and Palliative Medicine Workforce Task Force. Estimate of current hospice and palliative medicine physician workforce shortage. J Pain Symptom Manage. 2010;40(6):899-911.
8. S.641 - Palliative Care and Hospice Education and Training Act. Congress.gov website. https://www.congress.gov/bill/113th-congress/senate-bill/641. Accessed April 29, 2015.
9. Bruera E, Hui D. Integrating supportive and palliative care in the trajectory of cancer: establishing goals and models of care. J Clin Oncol. 2010;28(25):4013-4017.
10. Partridge AH, Seah DS, King T, et al. Developing a service model that integrates palliative care throughout cancer care: the time is now. J Clin Oncol. 2014;32(29):3330-3336.
11. Cancer Care Ontario, Action Cancer Ontario. Palliative care program: our vision. Cancer Care Ontario website. https://www.cancercare.on.ca/ocs/clinicalprogs/pallcareprog. Accessed April 29, 2015.