Palliative care has a serious identity problem. Seventy percent of Americans describe themselves as “not at all knowledgeable” about palliative care, and most healthcare professionals believe it is synonymous with end-of-life care.1 This perception is not far from current medical practice, because specialty palliative care—administered by clinicians with expertise in palliative medicine—is predominantly offered through hospice care or inpatient consultation only after life-prolonging treatment has failed. This means that the majority of patients who could benefit from palliative care are not receiving it until they are very close to death. To ensure that patients with metastatic breast cancer receive the best cancer care throughout their disease trajectory, palliative care should be initiated alongside standard oncology care, and it should be implemented early.
For palliative care to be used appropriately, clinicians, patients, and the general public must understand the fundamental differences between palliative care and hospice care. Hospice care should be provided exclusively to patients who are willing to forgo potentially curative treatments or are too ill to continue receiving treatments and have a physician-estimated life expectancy of 6 months or less.2 In contrast, palliative care is not limited by a physician’s estimate of life expectancy or a patient’s preference for curative medication or procedures. According to a field-tested definition developed by the Center to Advance Palliative Care and the American Cancer Society, “Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.”1 Several clinical trials have shown the benefits of early specialty palliative care in patients with advanced cancer.3 The effect of early specialty palliative care in other patient populations is less well studied, but there are data suggesting a beneficial role in patients with multiple sclerosis4 and congestive heart failure.5,6 For the purpose of this article, the focus will be on patients with stage IV breast cancer.
It is important for patients with metastatic breast cancer to know that receiving palliative care is not the same as entering hospice. Also, receiving palliative care does not mean the patient is nearing the end of life. In fact, as nurse navigators who are also serving in the role of being patient advocates, you should be encouraging oncologists to offer palliative care services at the time of diagnosis of their patients with stage IV disease. A palliative care doctor should be part of the patient’s multidisciplinary care team just as the navigator is. An effective treatment plan for advanced cancer can, and usually does, involve receiving the benefits of palliative care to manage symptoms caused by the cancer itself or side effects caused by the treatment.
Put simply, palliative care is an area of medicine that focuses on providing relief from symptoms, pain, and stress—no matter the diagnosis or stage of illness. It is specialized medical care that carries a specific goal of improving or maintaining the patient’s quality of life. It is often provided by a team of doctors, nurses, and other specialists who work with the patient’s existing care team to provide her an extra layer of support. The patient receiving palliative care can expect relief from symptoms and side effects that are disrupting her ability to enjoy life and spending her time as she desires. Providers specializing in palliative care are experts in alleviating symptoms such as fatigue, pain, difficulty sleeping, anxiety, depression, nausea, shortness of breath, constipation, diarrhea, loss of appetite, and more. This kind of relief can help patients carry on with their life and focus on other things that are important to them. It can also help patients improve their physical and mental ability to continue receiving cancer treatments. For example, palliative care doctors are experts in creating effective alternative ways to manage pain without relying on opioids as the solution. Palliative care teams are also experts at utilizing effective communication, offering more time to discuss how best to align the patients’ treatment options with their unique and personal values. Furthermore, the palliative care team will help ensure that patients’ emotional and spiritual needs are met throughout the time they and their family are dealing with this disease. All of this can be accomplished at a location that best suits their needs, including the hospital, outpatient clinic, or their home.7-9
An important component of palliative care lies in aspects that are not typically considered “medical,” but rather in the realm of psychological and spiritual support. A skilled and experienced palliative care doctor is able to provide the patient the type of support needed so she can realize her own values and how these values would fit alongside her treatment plan, ultimately enabling her to regain a sense of independence and control and have a strong quality of life in the face of her illness.
There are known reasons why medical oncologists may not offer palliative care to their patients. The first is concern that they will lose control of the care of their patients and feel as if they are being replaced. Another issue, however, is that the oncologists do not feel they need any help in taking care of their patients, including management of their symptoms or side effects. Most commonly, however, medical oncologists rely on narcotics to control the symptoms that are causing the patients to be in pain, be unable to care for themselves to the degree possible, or are disrupting their life in other tangible ways. There is also a problem with the patients not being honest with their doctor about the symptoms and side effects they are experiencing out of fear that if they “tell all,” they may be taken off of the current treatment or even told that it is time to discontinue treatments. So there is enabling behavior that needs to be recognized, which is an ideal role for a nurse navigator. The family members may also be more forthcoming, providing honest information about how the patients are really managing their life’s activities currently.
The navigator is also well positioned to bring up the topic of palliative care at a breast cancer tumor board case discussion, so that other providers who perhaps have had positive experiences with palliative care providers can reinforce the benefit of adding such professionals to the patients’ treatment team.
Truths and Myths About Palliative Care
We need to educate the patients, their family members, and friends about what palliative care is and isn’t.
There are many misconceptions about palliative care, many of which will delay patients from receiving an improved quality of life. The following information from the National Institutes of Health Clinical Center seeks to provide patients with increased knowledge about palliative care and to clarify the numerous misconceptions that surround it.10
Myth: Palliative care is only for people who are at the end of their life.
Truth: Palliative care should be integrated early in the disease process while disease-modifying treatments are being offered to maximize quality of life and combat symptoms and suffering.
- Myth: Palliative care and hospice are the same type of care.
Truth: Although both types of care focus on improving quality of life for the patients and their family through expert symptom and supportive care, palliative care is offered to all individuals at any stage of disease at the same time disease-modifying or curative treatments are being offered. Hospice care is usually offered when treatments are no longer effective or no longer felt to be beneficial.
There are many symptoms an individual could be experiencing that would qualify them for a palliative care consult: nausea, vomiting, diarrhea, constipation, loss of appetite, trouble sleeping, itching, restlessness, to name just a few. Referrals are also made to help with nonphysical types of suffering such as anxiety, depression, spiritual distress, and other concerns that may impact quality of life of patient and family.
Myth: When I work with palliative care, I will no longer see my other physicians.
Truth: Palliative care providers are specially trained consultants who work with the patient’s other providers to assist in the management of her symptoms and quality of life. They do not replace other providers. The palliative care consult team will work with the primary team to come up with a treatment plan.
- Myth: Palliative care sounds like it would be expensive for me.
Truth: Palliative care is often handled much like a referral to a cardiologist, neurologist, or other specialist. Most insurance plans, including Medicare and Medicaid, readily cover palliative care. The provider or organization offering the services will bill the patient’s insurance accordingly; just be sure to understand what copays or fees—if any—the patient will be asked to pay. It is usually helpful to ask about the patient’s responsibility for fees and request a fee schedule from their insurance company before agreeing to receive services.11
The inclusion of this information was prompted after hearing stories from patients who did not know the benefits of palliative care or that it even existed for them. Some were sadly never offered it during their journey. The hope is that this information has been helpful and enlightening. Nurse navigators usually advocate for oncologists to offer palliative care services at the time of diagnosis of metastatic or advanced cancer. An excellent, trusted resource created specifically for patients who are interested in learning more about palliative care is provided by the organization Get Palliative Care.8 It offers an educational website designed to define and promote palliative care and provides a nationwide directory of palliative care physicians and programs. The organization also regularly updates its website with articles, stories, videos, podcasts, webinars, and news, all of which can be found at https://getpalliativecare.org.
Palliative care is not limited based on an oncologist providing predictions of a patient’s end of life occurring within the next 6 months; palliative care can and should be provided early on, when symptoms from the cancer or side effects from the treatments are negatively impacting the patient’s quality of life. It should be viewed as quality-of-life preservation or, for patients who have been significantly impacted by the disease and its treatment, quality-of-life restoration to the degree possible.
Palliative care specialists are trained in communicating to patients differently. They are not the treating physicians, trying to control the cancer. They are instead focused on quality of life and what is important to the patient. There can be a tendency to lose sight of this aspect of care when oncologists feel very driven to focus on tumor shrinkage and what additional treatments may be available to offer the patient in the future when current treatments fail. Palliative care oncologists focus on treating the whole patient, rather than the disease. They gather information about who this woman is with stage IV breast cancer. She had a life before her diagnosis. What was that life all about? She still needs a life that she can enjoy while receiving treatment, and she needs to have frequent conversations about what her goals of care are, today and in the future as her health changes. There are key questions that the palliative care team at Johns Hopkins has taught all of the oncology staff to discuss with patients. These questions are actually on Johns Hopkins Cancer Center employee ID badges. These questions are listed below:
- How much do you know about your cancer?
- How much do you want to know about your cancer?
- What are you hoping for?
- What are you most worried about?
- Tell me 3 things that bring you joy (or gave you joy before you got sicker)
The answers to these key questions provide great insight into the patient’s emotional well-being and what is important to her. Palliative care specialists also are well positioned to reinforce with the patient what the current treatments are expected to do. This is necessary, because many patients believe that treatment is still intended to cure them when it is not. Whether it be denial, poor communication, assumptions, or misinterpretations of words like “respond to treatment,” it is known that patients can be on a different mental track than their treatment physicians. Palliative care professionals can bridge that gap in communication to help ensure the patient understands what the treatments are currently designed to do, and what happens when they stop working.12
There is also an economic benefit to early palliative care. Control of symptoms, understanding of goals of care, and focus on quality of life help to deter patients from using the ED for side effects management. It also helps patients to utilize palliative care services for interim support rather than the family requesting an inpatient bed for their loved one to control symptoms or side effects. Palliative care specialists can also educate family members to focus on their loved one’s goals of care, which usually are more focused on quality of life and less on quantity of life. Fewer patients with advanced cancer die in ICUs if palliative care is incorporated into their ongoing care early on. This is believed to be due to patients and families understanding that treatments have no curative intent. Therefore, placing a patient on life support in the hope she will become stable enough to resume receiving chemotherapy is bad care and commonly due to a lack of communication and candid conversations about goals of care.7
Navigators are perfectly positioned to serve as an extension of the palliative care team by reiterating the information provided by these specialists. In addition, navigators can dispel the confusion that palliative care is only available as part of hospice care.
Once a patient is enrolled in hospice, however, and treatments have stopped, palliative care will be needed more than ever. Ideally, the palliative care team that has been involved with the patient’s ongoing care can remain involved as the patient enters the final phase—end-of-life care. Although this article is focused on the value of patients with metastatic breast cancer receiving palliative care early in their treatment process, studies have also demonstrated that hospice care needs to be introduced earlier than it commonly is. Hospice care is intended to last for up to 6 months; however, most patients are receiving only 1 or 2 weeks of hospice care. Hospice becomes involved because the patient is too ill to continue treatments. Hospice should be an expected and natural step in the continuum of care, and, when introduced earlier than it is today, results in patient’s having a higher quality of life and ironically also living longer because they are no longer receiving toxic treatments that negatively impact their immune system, which hastens their death.7
Palliative care must become integrated into inpatient and outpatient settings and across both the acute and chronic phases of disease. Although we know that hospital-based palliative care teams effectively reduce inpatient costs while improving quality of life, palliative care is still not available in all cancer center environments or to the degree that patients need.
The American Hospital Association and Center to Advance Palliative Care have released guidelines encouraging the use of palliative care services for the management of complex conditions in inpatient settings.13 The Commission on Cancer also has developed specific standards focused on providing palliative care for cancer patients across the continuum of care.14 Navigators can facilitate the referral process to palliative care specialists based on the symptoms and side effects a patient is experiencing so quality of life becomes the priority. And when the timing is right, a thoughtful discussion about hospice care can take place.
Navigators are in the lives of women with metastatic breast cancer during the most critical and vulnerable time of these patients’ life. We owe it to our patients to advocate for them, recognize when palliative care should begin, and continuously focus on the patient’s goals of care.References
1. Center to Advance Palliative Care. 2011 Public Opinion Research on Palliative Care: A Report Based on Research by Public Opinion Strategies. New York: Center to Advance Palliative Care; 2011. https://media.capc.org/filer_public/18/ab/18ab708c-f835-4380-921d-fbf729702e36/2011-public-opinion-research-on-palliative-care.pdf.
2. Centers for Medicare & Medicaid Services. Medicare Hospice Benefits. Baltimore: 2013. www.medicare.gov/Pubs/pdf/02154-Medicare-Hospice-Benefits.pdf.
3. Greer JA, Jackson VA, Meier DE, Temel JS. Early integration of palliative care services with standard oncology care for patients with advanced cancer. CA Cancer J Clin. 2013;63:349-363.
4. Higginson IJ, Costantini M, Silber E, et al. Evaluation of a new model of short-term palliative care for people severely affected with multiple sclerosis: a randomised fast track trial to test timing of referral and how long the effect is maintained. Postgrad Med J. 2011;87:769-775.
5. Hauptman PJ, Havranek EP. Integrating palliative care into heart failure care. Arch Intern Med. 2005;165:374-378.
6. Brumley R, Enguidanos S, Jamison P, et al. Increased satisfaction with care and lower costs: results of a randomized trial of in-home palliative care. J Am Geriatr Soc. 2007;55:993-1000.
7. Johns Hopkins Medicine. Palliative Medicine. www.hopkinsmedicine.org/palliative_care/patient_services.html. 2018.
8. Center to Advance Palliative Care. Get Palliative Care. What Is Palliative Care? https://getpalliativecare.org/whatis. 2018.
9. Shockney L, Trahan T. The Guiding Light Between Shorelines. A Resource, Education, and Support Guide for Advanced Cancer Patients and Their Family Caregivers. Johns Hopkins Medicine. https://aonnonline.org/education/navigation-tools. 2018.
10. National Institutes of Health. Pain and Palliative Care. Palliative Care Truths and Myths. https://clinicalcente.nih.gov/palliativecare/truths_myths.html.
11. Start the Conversation. Palliative & Hospice Care. www.starttheconversationvt.org/palliative-care-hospice/palliative-care/who-pays-for-palliative-care.
12. Shockney L. Fulfilling Hope: Supporting the Needs of Patients with Advanced Cancers. New York, NY: Nova Science Publications, Inc; 2014.
13. American Hospital Association. Palliative Care Services: Solutions for Better Patient Care and Today’s Health Care Delivery Challenges. www.hpoe.org/resources/ahahret-guides/1148. 2012.
14. The Commission on Cancer. Cancer Program Standards: Ensuring Patient-Centered Care (2016 Edition). www.facs.org/quality-programs/cancer/coc/standards. 2016.