Effective Palliative Care: What Is Involved?

It is important for oncologists who provide comprehensive cancer care to be familiar with the principles of primary palliative care and interdisciplinary team–based approaches to palliative care. Palliative care is a medical subspecialty that provides specialized care to individuals with serious illnesses, with a primary focus on providing symptom relief, pain management, and relief from psychosocial distress, regardless of diagnosis or prognosis. Ideally, palliative care is provided by a team of physicians, nurses, social workers, psychologists, and chaplains. The core of palliative care is addressing, in depth, the physical, emotional, and spiritual suffering that a patient can experience. Palliative care is a key component of oncologic care, and we highly recommend that it be integrated into the plan of care for patients with advanced cancer. Early integration of palliative care has been shown to provide improved outcomes in patients with advanced cancer. This article reviews the ways in which palliative care and oncology teams can collaborate to provide high-quality care to patients and their families; it also provides practical tips for oncologists who wish to initiate primary palliative care for their patients. Prior to referral to a specialized interdisciplinary palliative care team, oncologists may start advance-care planning discussions, provide basic pain and non-pain symptom relief, and utilize assessment tools. If a specialized palliative care team is not available, the oncologist will often address additional aspects of palliative care, with assistance from social work departments and other resources in the community.

What Is Palliative or Supportive Care?

Palliataive care is a medical subspecialty that provides care for people with serious illnesses; its primary focus is on providing symptom relief, pain management, and relief from stress, regardless of diagnosis and prognosis.[1] The American Society of Clinical Oncology (ASCO), the European Society for Medical Oncology, and the National Comprehensive Cancer Network all support the integration of palliative or supportive care with the practice of oncology.[2-4] Early integration of palliative care at the time of an advanced cancer diagnosis enhances patient care.[5]

Palliative care ideally is provided by an interdisciplinary team that should include a physician, nurse, social worker, and chaplain. Palliative care teams often include or work closely with other specialists, such as physical or occupational therapists, psychologists, nutritionists, acupuncturists, music therapists, and massage therapists. Palliative care is a holistic, team approach to patient care, addressing patients’, and their caregivers’, physical, emotional, practical, and spiritual needs. Oncologists often feel that they are able to provide palliative care for their own patients. Indeed, they may be able to succeed in medical symptom management; however, true palliative care addresses more than just physical suffering because it is delivered by an interdisciplinary team that focuses on various aspects of care and quality of life.

The 2017 ASCO guidelines recommended that any patient with advanced cancer-inpatient or outpatient-should receive dedicated palliative care services, ideally earlier in the disease course, concurrent with active treatment and within the first 8 weeks of diagnosis.[6] Cancer symptoms and side effects from treatment require additional management. Patients may receive palliative care at any stage of illness, and it is appropriate for patients of any age with cancer or other noncancer advanced illnesses. Palliative care can be given along with aggressive treatment; patients can receive chemotherapy or radiation therapy or undergo surgical procedures while also receiving palliative care. In fact, studies have shown that starting palliative care earlier provides better quality of life and may extend survival.[7] Palliative care teams focus on building relationships and rapport with patients and their families over time, while also addressing symptoms, emotional needs, and functional abilities. The palliative care team educates the patient and his or her family about the illness and prognosis, and clarifies goals of care.[6,8]

A Cochrane review examined seven studies of early palliative care interventions vs standard cancer care that compared health-related quality of life, depression, symptom management, and survival.[9] Of these seven studies, five were prospective randomized controlled trials, and the remaining two were cluster randomized trials.[9] A randomized controlled trial conducted by Temel et al showed that early integration of palliative care along with standard oncologic care in patients with non–small-cell lung cancer resulted in a prolongation of survival of approximately 2 months and a clinically meaningful improvement in quality of life and mood.[10] Otis-Green et al studied patients at all stages of non–small-cell lung cancer and found that quality-of-life improvements were greater in patients with early- vs late-stage disease states.[11] The ENABLE III trial by Bakitas et al studied an intervention by specialty nurses in an outpatient setting in a mixed cancer population, and found that the intervention led to patient education and empowerment. However, it also demonstrated that studying a patient population for only 3 months and delaying the palliative care intervention resulted in insignificant improvement in quality-of-life scores and symptom intensity.[12] Maltoni et al conducted a prospective randomized study of patients with metastatic or locally advanced inoperable pancreatic cancer. This study on the impact of early palliative care, in addition to standard cancer care, revealed lower symptom intensity in the early palliative care group at 3 months, as well as a higher quality of life.[13] These studies provide moderate evidence of improved survival with early intervention carried out in an ambulatory palliative care setting, as well as improvements in advance care planning, healthcare utilization, planned discharge, and decreased emergency room visits, with better hospice utilization.[7]

How Does Palliative Care Differ From Hospice Care?

A common misunderstanding is that palliative care is the same as hospice care. While both services follow an interdisciplinary approach, and address physical, emotional, and spiritual well-being, there are important differences. Palliative care is provided at any point of a chronic disease, with the goals of providing comfort, quality of life, and support to patients and their families. While the goal of hospice care is also symptom relief, a key difference is the patient’s prognosis and goals of care.[14] Hospice care provides comfort without a curative intent, when there are no longer curative options available or when a patient has chosen not to pursue curative or aggressive treatment because the side effects outweigh the benefits.

Eligibility for hospice care requires that two physicians certify that a patient has less than 6 months to live, if the disease were to follow its natural progression. In contrast, palliative care can begin at any time and at any stage of illness, terminal or not, at the discretion of the physician and patient.

Hospice services can be paid for by Medicare, Medicaid, or private insurance. The covered services include medications related to the diagnosis that led to hospice care, as well as medical equipment; 24/7 phone access to care; nursing, physician, chaplain, and social service visits to the home; and bereavement support following a death. Hospice care is typically delivered at home or in facilities such as nursing homes and assisted-living residences, but can also be delivered in hospitals.[14]

What Can Palliative Care Provide to Your Patients?

Successful palliative care teams complement oncologic care. Palliative care teams are able to take more time with patients and their families to provide a comprehensive baseline assessment and follow-up assessments that include evaluation of quality of life, as well as of physical, psychological, spiritual, and social domains. They can also assist with disclosure of prognosis. This team-based approach ensures that patients experience a smooth transition from the hospital to other services, such as home care or nursing home facilities.

Palliative care reduces suffering and distress among patients and families at any stage of disease. It can be especially beneficial to patients who have:

• High levels of suffering and psychosocial, emotional, or spiritual distress.

How Can Oncologists Provide Palliative Care Services During Their Visits?

Despite the increase in fellowship-trained palliative care physicians, their numbers still do not meet current patient demand. A 2011 study showed that there was 1 oncologist for every 141 newly diagnosed cancer patients in the United States, but only 1 palliative medicine physician for every 1,200 persons living with a serious or life-threatening illness.[15] Therefore, it remains crucial for all healthcare providers to receive training in basic palliative care skills since it is not feasible for all patients with cancer to be cared for by palliative care teams.[8]

Assessing for and managing physical symptoms that are a result of a cancer diagnosis or a side effect of treatment helps improve a patient’s quality of life. Additional palliative care services and skills that can be provided by the oncology team are listed in Table 2.

Common palliative care principles that oncologists can adopt include improving symptom assessment and management by using patient and family goals vs problem-focused care as the guiding principle; improving understanding of prognosis and delivering prognosis information with compassion and empathy; and recognizing that spiritual, psychosocial, and cultural elements play a relevant role in causing suffering for patients with serious illnesses.[16]

How to Effectively Communicate With Your Patients

In addition to providing symptom management to patients, an important goal of palliative care is to assist patients with advance care planning. Communication is a foundation of palliative care, and nowhere are good communication skills as important as they are in discussions of advance directives and goals of care.

Studies show that patients with chronic illness want to talk about their choices and goals of care, as well as have frank discussions about prognosis in the disease trajectory.[1] Patients usually prefer that their oncologists and primary care physicians initiate conversations regarding advance directives and goals of care. Involvement of the primary healthcare provider is essential, since no one is better suited to discuss patients’ goals, desires, and quality-of-life outcomes than the physician who knows the patient best and has the patient’s and family’s trust.

It is best to assess a patient’s and family’s readiness for a conversation first and to explore their understanding of the disease and its likely course, as well as treatment options. The “ask, tell, ask” method of communication is well documented and suitable for any type of communication.[17] This strategy elicits the patient’s understanding of his or her situation and allows the clinician to assess the patient’s knowledge base, education level, emotional state, and misperceptions. It is helpful to deliver information in a clear, concise, and easy-to-understand manner, divulging information in small doses to help the patient process it. It is also important to inquire about the patient’s understanding of the information and, if needed, to ask him or her to restate what was said. Patients often respond favorably if the physician asks what is important to them and explores their values and goals.

The mnemonic device SPIKES is a commonly used framework for delivering bad news and communicating with patients and their families. SPIKES provides a stepwise approach to difficult discussions; each letter represents a phase in the discussion sequence. Key components of the SPIKES approach include an emphasis on demonstrating empathy, and acknowledging and validating the patient’s and family’s concerns and feelings.[18,19]

S: Setting. Invite all appropriate participants to the family meeting in a private, quiet environment. Sit at eye level.
P: Perception. Ask the patient and family about their understanding of the medical situation. Open-ended questions are helpful (eg, “What have you been told about your condition so far?”)
I: Invitation or Information. How much information does the patient want? A “warning” question is helpful prior to delivering news (eg, “Is it all right if I review your medical status, including your prognosis?”)
K: Knowledge. Inform the patient in simple, straightforward terms, and repeat any information to gauge his or her understanding. It is important to provide an estimated prognosis if the patient desires (eg, “I would not be surprised if you became much sicker in the next 6 months”). Give information in small doses and pause so the patient can process it. Offer to review what to expect as time goes on.
E: Empathy. Respond and reflect on emotions. Empathetic responses include observing the patient’s response (tone, behavior, expression), identifying emotions, connecting with the reasons for them, and acknowledging the emotions verbally.[19] Avoid apologizing. Patients often feel supported by “I wish” statements (eg, “I see that you are upset; I wish you did not have to hear this today”).
S: Summarize or Strategize. Plan for a follow-up, review the next steps, and establish goals of care (eg, “If time were running short, where would you want to be, and what would you want to be doing?”) If they say they prefer to be home around their loved ones, make a recommendation to allow natural death (“do not resuscitate” and “do not intubate” orders) and review all that you would continue to do for them if they develop any symptoms that require intervention.

Additionally, Gawande has identified five key questions to ask patients that may further assist in advance care planning[20]:

1. What is your understanding of where you are and of your illness?
2. What are your fears or worries for the future?
3. What are your goals and priorities?
4. What are you willing to sacrifice for the prospect of more time? What outcomes are unacceptable for you?
5. What does a good day look like?

These simple questions allow physicians to understand who their patient is and to see him or her as a person. They elucidate patient goals and what the patient is hoping for if he or she becomes sicker. This also allows the physician to recommend what should (and should not) be done to support the patient’s treatment philosophy, given his or her diagnosis and prognosis.[21]

In addition, it is vital to communicate a patient’s prognosis if he or she desires to know it. Prior to having any discussion in which “bad news” may be conveyed, it is important to ask patients how much they would like to know about their illness, and in particular, about their prognosis.[22] Studies show that the majority of patients and families want to know about their illness, including what symptoms may occur and expected survival. While the majority of physicians believe that patients should be provided with the truth about prognosis, in practice, they often avoid these discussions.[22,23] Being candid about prognosis facilitates discussions regarding advance directives, which can enable patients to avoid potentially harmful and inappropriate cancer therapies toward the end of life.[24]

When to Refer to a Palliative Care Specialist

Weissman and Meier categorized palliative care skill sets by identifying three levels of palliative care: primary, secondary, and tertiary. They defined primary palliative care as the basic skills and competencies required of all physicians and other healthcare professionals. Secondary palliative care is provided by specialists in the form of a consultation. Tertiary care utilizes specialists to address the most complicated cases; these specialists are also often involved in research and teaching in palliative care (Figure).[25]

Examples of situations in which consultation with a palliative care team is recommended include:

• Conflicts among family and/or healthcare teams regarding treatment and goals of care, as well as difficulty with coping.

KEY POINTS

An interdisciplinary palliative care team consists of physicians, nurses, social workers, psychologists, and chaplains who work together to provide symptom relief, pain management, and relief from psychosocial distress.
Common palliative care principles that oncologists can adopt include improving symptom assessment and management; improving understanding of prognosis and delivering prognosis information with compassion and empathy; and recognizing that spiritual, psychosocial, and cultural elements play important roles in causing suffering for cancer patients.
Referral to a specialized palliative care team is necessary for management of refractory pain and other symptoms; complex depression and anxiety; conflicts among family and/or healthcare teams; and questions related to home palliative care or hospice programs.
Communication is a foundation of palliative care. Studies show that patients with chronic illness want to talk with their oncologist about their choices and goals of care, as well as have frank discussions about prognosis.

What to Do if There Is No Palliative Care Team Available

While many major institutions have an interdisciplinary palliative care team available, there are still a significant number of facilities that lack the support of a specialized team. Even if an interdisciplinary palliative care team is unavailable, the basics of palliative care can be offered through various departments that are present in many hospitals and outpatient facilities.

Patients are often referred to social workers for ineffective coping, depression, or anxiety resulting in interference with their medical care. Social workers are often trained in grief counseling and bereavement, and can work with adults and children, their families, and the community to help them deal with the impact of what is happening to them, reiterating key medical messages, and addressing myths or misconceptions related to treatment.[11] Social workers and child life specialists may be invaluable resources to families on how best to communicate with others about the patient’s disease, as well as how to communicate with the medical team.[11]

In addition to utilizing the social work department, an oncologist could consider a referral to pastoral care to help with the patient’s spiritual and religious well-being. It is not unusual for patients to question their faith at the time of a medical crisis. Patients often struggle with existential concerns and question their identity, self-image, or purpose in life.[11] Spirituality has been shown to be a key factor in how people understand their illness and how they cope with suffering. Consultation with or referral to pastoral care is often appropriate, can help aid in managing uncertainty and helplessness, and allows patients to make their values and goals known to both their medical team and their family.[11]

As was noted previously, oncologists themselves can also assist with the management of commonly encountered symptoms and treatment side effects in the cancer patient population. For further assistance in symptom management, Palliative Care Network of Wisconsin has a series of Fast Facts that are quick and simple guides to basic symptom management.[26]

The American Academy of Hospice and Palliative Medicine provides several resources, including online access and print materials on symptom management, psychosocial aspects of serious illness, and policies regarding palliative medicine, as well as how to approach caring for patients near the end of life.[27] Additionally, the Center to Advance Palliative Care provides tools, training, and metrics to build and sustain palliative care in all healthcare settings. Numerous resources are available through their organization that can help with building palliative care programs, providing the basics of how to bill and code for advance care planning, and symptom management.[28]

Local hospice facilities can also provide information on home services that may be available to patients and caregivers. Many communities have home health agencies, nursing services, and wound care services that can be provided to patients. Communication with local hospice facilities and agencies can help with transitioning patients and helping them understand what hospice care can offer. Several hospice agencies across the nation have home-based palliative care programs that can be offered to patients dealing with advanced illness and can help transition patients to hospice services when deemed appropriate.

Conclusion

Palliative care should be provided to patients with any serious or advanced illness, independent of prognosis or disease-specific treatment.[14] Significant research demonstrates that palliative care improves symptom distress; quality of life; patient and family well-being; and, in some settings, survival (eg, advanced lung cancer). Palliative care reduces the unnecessary use of hospitals, diagnostic and treatment interventions, and non-beneficial intensive care.[10,29-31]

Financial Disclosure:The authors have no significant financial interest in or other relationship with the manufacturer of any product or provider of any service mentioned in this article.

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