In an article published in the Journal of Clinical Oncology, the authors provide a review of relevant research with regard to end-of-life care for cancer patients, and they identify the ways that hospice care assists patients with advanced cancer and their loved ones who become caregivers. Ways in which hospice care can improve are also highlighted.

Priorities for Cancer Patients at the End-of-Life

The researchers observe that several studies have sought to explore the priorities of patients with advanced cancer and that of their caregiver for end-of-life care.  Some of the most commonly indicated priorities were related to the following:

• Pain and symptom management
• Feeling well enough to spend time with loved ones
• Dealing with matters of business and legacy that had yet to be taken care of

As a result, the researchers state that “hospice care services have grown rapidly to support families and communities to care for people at home (including in skilled nursing facilities) through excellence in physical symptom control, psychological support, spiritual care, and support for caregivers.”

Mitigating the Burden of Symptoms

According to the research, hospice care allows for improvement of symptom management in issues that are commonly expected at the end-of-life. Symptom mitigation for advanced cancer patients nearing the end-of-life often involves addressing one or more of the following common symptoms:

• Pain
• Fatigue
• Breathlessness
• Delirium

The inability to feel pain was identified by the article as commonly the priority for patients and their loved ones over any other symptom. The evidence suggests that hospice care offers superior pain management to patients. Furthermore, it is noted that another priority symptom, delirium, which includes changes in cognitive function, illusions from hallucinating, and disruptions of sleep and wake cycles, can be treated with excellent nursing care.  Nurses can treat reversible causes, assist in orienting the patient, and provide appropriate hydration and nourishment.

Optimal Integration within End-of-Life Care

The researchers encourage practitioners to explain the prognosis of rapidly declining advanced cancer patients with them, and refer them to hospice services. Optimal end-of-life care for cancer patients, as noted by the article includes:

• Every Health Professional Having Competency in Core End-of-Life Care Skills:  This consists of identifying the end-of-life status, understanding the key tenets of symptom management and interdisciplinary care, conducting patient-centered, effective communication and shared decision-making, executing excellent clinical skills in thorough bedside evaluation, and engaging with empathy and compassion.

• Care from a Team-Based Approach:  The article explains that patients tend to be more likely to express their concerns and disclose information about more issues when an interdisciplinary team is providing care and since the patient-identified needs are extensive at the end-of-life, multiple health clinicians working collectively is essential to accomplish the most optimal outcomes for the patient.

• Collaboration and Communication Between Hospice and Other Care Providers:  Most advanced cancer patients either change locations for care or are admitted to a hospital near the end-of-life, and therefore, effective communication between all involved providers is imperative. Despite consistently improving electronic medical records, the challenge still persists for all clinical teams to be aware of the communication that each care provider has with the patient and their family.

Support for Caregivers

A key aspect of hospice care is the support provided to caregivers, and although research on the topic is limited, evidence suggests that the most effective support for caregivers results in: 

• Need for information and education being better met
• Decreased rates of depression 
• Improved ability to move forward with their own life after the death of their loved one

 In conclusion, the authors state, “Hospice provides patients with the potential for a better quality of life, improved symptom control, and more time away from inpatient care.” Furthermore, since most of the care for advanced cancer patients becomes the responsibility of caregivers, any additional support provided to them while acting in the caregiver role will likely be of significant advantage.

References

Currow, D. C., Agar, M. R., & Phillips, J. L. (2020). Role of hospice care at the end of life for people with cancer. Journal of Clinical Oncology, 38(9), 937-943. https://doi.org/10.1200/JCO.18.02235.

Based on a study published in the Journal of Palliative Medicine that was the first of its kind, elderly patients from several major United States ethnic minority groups pinpointed hindrances to the type of care they would like to receive at the end of life. Although all participants expressed that high quality end-of-life care was important to them, the majority disclosed that they face barriers to receiving such care. The two most common barriers they reported were physician behaviors and financial constraints.

The researchers stated, “our study is unique, as we used mixed methods to better understand a complex and sensitive research question with multi-ethnic participants.” They further expressed that there is an urgent need for training and support for physicians and allied healthcare providers with regard to facilitating culturally sensitive and effective end-of-life conversations early in the process of dealing with any chronic and serious illness, “in order to facilitate dignity at the end of life for diverse Americans.”

Investigators evaluated the data from a cross-sectional survey of 315 participants (at least 50 years of age) that were recruited from community-based senior centers in five cities in California from 2013 to 2014. The participating population by race and ethnicity was Caucasian/Hispanic (37.1%), Asian-American (50.8%) and African-American (12.1%).

The study was conducted by facilitating interviews in each participant’s preferred language with the assistance of medical interpreters. Personal identifiers were not solicited in order for participants to feel comfortable speaking freely, but demographic data were collected.

Overall Findings:

• All participants stated that they valued high quality end-of-life care
• 60.6% reported that barriers exist to receiving such care for members of their ethnic/cultural group
• Although there were differences based on level of education, there were no significant differences in the classification of barriers with regard to importance across ethnic groups

Major Perceived Barriers to High Quality Care:

• Lack of financial means or health insurance
• Physician behavior or practice style, as reported in patients’ perception (idea that physicians lack empathy, give broad answers to questions asked by patients and families, physicians do not have enough time for such discussions, or do not listen to patients and their families
• The “communication chasm,” between patients and physicians (for instance, language barriers, elderly patients’ incapability to hear well or comprehend medical terminology and the patient’s lack of understanding of their options for end-of-life treatment
• Family members having differing beliefs about death
• Health system obstacles, such as the lack of assistance in completing an advance directive
• Cultural and/or religious barriers and differences

The participant’s education level was the only demographic category shown to contribute to the ranking of barriers and obstacles. Those with no formal education categorized financial obstacles as the most significant barrier. Those with elementary-school-level education and higher, however, identified physician behaviors as the greatest barrier. Both groups ranked the “communication chasm” as the second most significant obstacle.

Although a patient’s health literacy is not usually critical, the researchers identified that “end-of-life situations, however, are different in that they require patients to take an active role, partner with their doctors, and make complex and high risk decisions in the face of an uncertain future.”

There are major issues to the underlying problem with regard to providing high quality end-of-life for ethnic minority populations. (1) As the American population shifts to a larger percentage of minorities, it is necessary to deliver culturally competent end-of-life care, and (2) the nation’s health system is fragmented in a way that it has not provided training or rewards to physicians for effectively communicating the end-of-life healthcare choices to their patients. Below are the recommendations that the researchers provide in order to target these issues.

Recommendations:

• Overall healthcare reform to ensure that diverse Americans can receive high quality end-of-life care regardless of their socioeconomic status
• Provide training to physicians so that they may communicate with empathy and cultural awareness (typically, the fragmented health system has pushed for treatments and/or procedures as opposed to conducting conversations)
• Incorporate health education into high school curriculum
• Encourage physicians to learn the necessary communication skills in order to explain complex medical issues both simply and comprehensively to patients and families
• Encourage patients to take the leading role when discussing their care choices with their families
• Develop incentives for physicians to gain adequate skills in primary palliative care and in providing the appropriate referrals for specialists in palliative care
• Coordinate and utilize interdisciplinary teams of experts to help patients navigate the complex medical, spiritual and existential issues at the end of life

According to the lead researcher, V.J. Periyakoil, MD, a clinical associate professor of medicine at Stanford University, “there is so much generalization and stereotyping…about how ethnic minorities want everything done, irrespective of how effective these treatments might be at the end of life,…I decided that we needed to go into their communities and ask them what they want.” Dr. Periyakoil also stated that “it’s a profound responsibility choosing whether a person dies at home or in a hospital, what types of treatments to attempt or forgo and when to limit or withdraw burdensome interventions and allow a natural death…in fact, the only right decision is what the patient wants.”

References

Periyakoil, V. S., Neri, E., & Kraemer, H. (2016). Patient-reported barriers to high-quality, end-of-life care: A multiethnic, multilingual, mixed-methods study. Journal of Palliative Medicine, 19 (4). https://doi.org/10.1089/jpm.2015.0403