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AMERICAN PSYCHOLOGICAL ASSOCIATION Office on Aging  KNOW THE FACTS Older Adults and Palliative and End-of-Life Care WHAT IS PALLIATIVE AND END-OF-LIFE CARE? Palliative care is a team-based approach to care for people with serious illness that is appropriate at any age/stage of illness. It can be provided along with curative treatment. Palliative care: • Is focused on improving the quality of life for individuals facing serious and limiting illness, and their care partners • Provides symptom management and relief from pain • Includes assessment and treatment of physical, psychological, and spiritual issues • Can also include respite care for family caregivers and bereavement care after the person dies End-of-life care focuses on palliative care for terminally ill individuals who may have only very limited time to live and have elected to no longer pursue curative treatment.

It is often tied to hospice care, which is defined in the United States as encompassing the final six months of life. WHAT ARE THE OBSTACLES TO RECEIVING PALLIATIVE AND END-OF-LIFE CARE? Health care providers want to preserve hope for individuals with serious and life-limiting illness. For example, physicians have difficulty saying that a cure is not possible. Some health care providers are uncomfortable asking or discussing an older person’s choices for care (e.g., hospital or home treatment, breathing machines or feeding tubes, curative care or comfort care).

As a result, older adults and their families may not know about or understand all possible care options. Some health care providers are uncomfortable asking or discussing an older person’s choices for care. AMERICAN PSYCHOLOGICAL ASSOCIATION Office on Aging  Some health care providers may lack experience in managing pain and other physical symptoms (e.g., fatigue, difficulty breathing, constipation, nausea) or in providing emotional support. Some believe that they must do everything to prolong life, regardless of pain and suffering, and continue to encourage their patients to not give up hope. They fear that offering only comfort care means that they are giving up or have failed their patient.

Many older adults do not plan in advance or express their wishes for care in later life. Sometimes they are nervous to bring up the topic of palliative care with those close to them or their health care providers. Often, they don’t know how to start such a discussion when they still are able. If the conversation about palliative care occurs too late—after an older adult has experienced a serious health event, or when they are too ill to express their wishes, and their families are in distress—they may not receive the care they prefer. Mental and behavioral health care is often overlooked as an important part of both palliative and end-of- life care for older adults.

Health care providers on palliative care teams may not have thorough training in managing mental health issues that are frequently present near end of life, and they may benefit from the skills of a psychologist. When not addressed, mental health issues such as depression can cause older adults to feel frustrated and hopeless about their illness. Untreated mental health issues can also make other symptoms worse. For example, anxiety can make it more difficult to breathe. WHAT MENTAL HEALTH ISSUES AND CONCERNS DO SOME OLDER ADULTS FACE NEAR END OF LIFE? • Anxiety and depression • Difficulty adjusting to physical and mental declines • Agitation, restlessness, and difficulty sleeping • Memory loss, confusion, and disorientation, which can lead to impaired decision-making • Existential issues (e.g., concerns about what happens after death, concerns about the meaning of life) • Previously undetected or undiagnosed Posttraumatic Stress Disorder (PTSD) • Concerns that they will not get the care they want (e.g., dying in their preferred place/with preferred people) • Relationship concerns (e.g., how to mend broken relationships, fear of being a burden to family members) • Communication difficulties (e.g., not knowing how to have discussions with family members and health care providers about the care they do want) • Concerns about family after their death WHAT WORKS?

Psychologists trained in end-of-life and palliative care are skilled in helping other health care team members understand older adults’ mental health concerns, health care preferences, and personal values. They work with other professionals, such as physicians, nurses, social workers, and chaplains, who also have important roles to play in providing compassionate palliative and end- of-life care to older adults. As part of the care team, the psychologist plays a critical part in diagnosing and treating anxiety, depression, cognitive and decision- making problems, and other mental health distress that may result from serious and life-limiting illnesses. Psychologists are skilled in helping older adults and their families.

They work with older individuals with serious illness and their families to address the mental health issues described above, provide physical symptom management, and help them understand and express their personal choices related to palliative care and end-of-life options. Psychologists are experts in assessing an older adult’s capacity to make decisions and then help them to identify and document their values and care preferences. This includes important decisions about feeding tubes, breathing machines, and restarting the heart (CPR). Psychologists can also help the family with bereavement and grief concerns before and after the person’s death. Psychologists can also help improve communication between older adults, their care partners, and other members of the health care team.

They can help older adults document their health care choices to share with their care partners in case they are no longer able to communicate, and they can help older adults know what questions to ask of their physicians. Psychologists can help improve communication between older adults, their care partners, and other members of the health care team. WHAT CAN YOU DO? • Listen for complaints of pain, psychological and physical symptoms from older adults that they may need help to manage. • Help older adults understand the importance of stating and documenting their preferences and values (using the tools listed below) and sharing this information with family members/care partners and health care providers. • Strive to understand the important role of culture, race, ethnicity, sexual orientation, gender expression, family status and religion for each individual. • Think about your own beliefs and possible biases related to palliative care and end-of-life care. • Observe and respect family dynamics and interactions and offer assistance in enhancing communication when appropriate.

WHAT RESOURCES CAN HELP? • Communication and decision-making tools for older adults and their family members – The Conversation Project theconversationproject.org – The University of Sydney Palliative Question Prompt Lists (questions to ask your doctor) bit.ly/2lMmyZI – American Bar Association Tool Kit for Advance Care Planning bit.ly/2kuJ5tT – Aging with Dignity Five Wishes (advanced care planning document) fivewishes.org • Communication tools for providers – VitalTalk – Tips for Breaking Bad News palliative.stanford.edu/communication- breaking-bad-news/delivering-bad-news • National Hospice and Palliative Care Organization • APA Office on Aging End of Life Issues and Care web page • Culturally Diverse Communities and Palliative and End-of-Life Care on.apa.org/end-of-life-diversity This fact sheet was written by Meghan McDarby, MA, based on the work of the members of the APA Working Group on End of Life Issues and Care: Elizabeth Goy, PhD (Chair), Rebecca S.

Allen, PhD, ABPP, Brian D. Carpenter, PhD, Carol J. Gill, PhD, Julia Kasl-Godley, PhD, Maureen E. Lyon, PhD, ABPP, Veronica L. Shead, PhD, & James L.

Werth, Jr., PhD, ABPP. SAYS WHO? American Psychological Association. (2017). Resolution on Palliative Care and End-of-Life Issues. org/about/policy/palliative-care-eol Carpenter, B. D. (2015).

Geropsychological practice with people near the end of life. In P. A. Lichtenberg & B. T.

Mast (Eds.). APA handbook of clinical geropsychology. Volume 2: Assessment, treatment, and issues of later life (pp. ). Washington, DC: American Psychological Association. Kasl-Godley, J.

E., King, D. A., & Quill, T. E. (2014). Opportunities for psychologists in palliative care: Working with patients and families across the disease continuum. American Psychologist, 69(4), . doi: 10.1037/a Kelley, A.S., & Morrison, R.S. (2015).

Palliative care for the seriously ill. New England Journal of Medicine, 373, 747-55. doi: 10.1056/NEJMra National Consensus Project for Quality Palliative Care. (2018). The Clinical Practice Guidelines for Quality Palliative Care (4th ed.) World Health Organization. (2019). WHO Definition of Palliative Care. Wright, A.

A., Zhang, B., Ray, A., Mack, J. W., Trice, E., Balboni, T.,… Prigerson, H. G. (2008). Associations between end- of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA, 300(14), . doi:10.1001/jama.300.14.1665 on.apa.org/end-of-life-diversity PSY605 End-of-Life Case Scenarios Case 1: Roger is a healthy 62-year-old African American male with a wife and four grown children.

While out on his morning jog two weeks ago, he was hit by a drunk driver. Roger has been left paralyzed from the neck down, and he is no longer able to perform basic life-sustaining functions such as eating or breathing without the help of machines. Because he can no longer talk or use his hands to write, his communication is limited to moving his head in simple “yes†or “no†responses when asked a question. His living will was last updated 25 years ago when his youngest child was born. The will indicates that Roger would like to receive life-saving treatments in these types of events.

However, when prompted by doctors, nurses, and the hospital-appointed social worker regarding his current wishes, he seems to be communicating that he does not want to continue living in his current state. Case 2: Geri is a 38-year-old single mother. Her son, Gabe, is 17 years old and a junior in high school. After experiencing some headaches and changes in mood over the past several weeks, Geri finally visited a neurosurgeon a week ago. During that visit, it was discovered that she has an inoperable brain tumor.

Her life expectancy is 6 to 8 months. In addition to fears about her own impending death, Geri is very worried about how to best provide for and take care of her son. She cannot decide if she should continue working full-time to make sure that Gabe’s expenses are taken care of, or if it is best to take this remaining time off to enjoy with her son. Once she is gone, she does not know if she should send Gabe to live with an aunt who lives several states away for his final year of high school, or if she should allow him to live with a friend in their neighborhood and grant custody to that parent so Gabe could continue living and going to school where he is most comfortable. She is also at a loss as to how to explain this situation to Gabe in a way that he will understand so that both of them will be able to move forward.

Paper for above instructions

Understanding Palliative and End-of-Life Care: A Comprehensive Analysis

Introduction

Palliative and end-of-life care are essential services provided to individuals with serious illnesses and terminal conditions. While palliative care focuses on improving quality of life by relieving pain and providing psychological and spiritual support, end-of-life care pertains specifically to patients nearing the end of life, often in hospice settings (American Psychological Association [APA], 2017). This essay examines these care systems, the common barriers to accessing them, the mental health dimensions pertinent to older adults, and strategies to empower patients and their families through the complexities of decision-making in serious illness.

The Scope of Palliative and End-of-Life Care

Palliative care is distinguished by its holistic approach, addressing physical, psychological, and spiritual needs (National Consensus Project for Quality Palliative Care [NCPQPC], 2018). This is crucial in alleviating the distress and suffering associated with serious illnesses. End-of-life care is particularly targeted at ensuring comfort and dignity during the final phases of life, often involving hospice care services that typically begin when prognosis is limited to a six-month window (Wright et al., 2008).
Palliative care does not necessitate forgoing curative treatments and can be integrated early in the course of serious illness (Kelley & Morrison, 2015). The flexibility of these services allows patients to tailor their care to personal values and preferences as they navigate difficult decisions regarding treatment options, life-sustaining therapies, and end-of-life wishes.

Barriers to Receiving Palliative and End-of-Life Care

Despite the importance of these services, several obstacles hinder their effective delivery to older adults. Health care providers may struggle with balancing hope for recovery and the realities of terminal illness. This reluctance to discuss palliative or end-of-life options can deprive patients of the information they need to make informed decisions (APA, 2017).
Moreover, many older adults do not plan ahead or articulate their care preferences. Cultural norms, communication challenges, and fear of death can inhibit open discussions about palliative care (Kasl-Godley et al., 2014). Many providers lack training in managing complex symptoms or addressing mental health concerns, which can further complicate care delivery (APA, 2017).

Mental Health Issues at End of Life

Mental health considerations are critical to the well-being of individuals receiving palliative and end-of-life care. Older adults often experience depression, anxiety, and existential distress, exacerbated by the psychological toll of serious illness (Carpenter, 2015). Issues such as isolation, fear of loss of autonomy, and concerns about being a burden to family members can significantly impact the emotional state of patients (APA, 2017).
Posttraumatic Stress Disorder (PTSD) may also emerge in older adults as they confront the uncertainties associated with their illnesses and impending death (Wright et al., 2008). Furthermore, cognitive decline can impair decision-making abilities, complicating discussions about care preferences and leading to increased frustration and anxiety for both patients and caregivers (APA, 2017).

The Role of Psychologists in Palliative Care

Psychologists trained in end-of-life care can play a vital role in enhancing the quality and effectiveness of palliative care. Their expertise positions them to address the psychological needs of patients and their families, facilitating open communication and improving overall care (Kasl-Godley et al., 2014). Psychologists can assist in documenting patient preferences, thereby ensuring that their wishes are respected even when they are unable to communicate.
Additionally, psychologists are equipped to help families navigate complex emotions during the grieving process, both before and after a loved one’s passing. Their skills in managing mental health issues such as anxiety and depression can significantly contribute to an overall better quality of life for patients in palliative and end-of-life care (Kelley & Morrison, 2015).

Empowering Patients and Families: Strategies for Effective Communication

Implementing effective communication strategies is crucial for patient empowerment in palliative care settings. It is imperative for healthcare professionals to create safe environments where patients feel comfortable discussing their care preferences. This can start with active listening to the concerns of older adults, as well as utilizing communication tools designed to facilitate these discussions (American Bar Association, n.d.).
Encouraging families to engage in advance care planning can also help clarify patient wishes and alleviate future distress during critical healthcare decisions. Resources such as the “Five Wishes” document or the “Conversation Project” can guide both patients and their families in articulating their preferences regarding end-of-life care (Aging with Dignity, n.d.).

Conclusion

Palliative and end-of-life care are critical components of healthcare for older adults facing serious illnesses. Despite numerous barriers to accessing these services, the importance of mental health cannot be overstated. As psychologists work alongside healthcare providers, they can enhance the quality of care and ensure that patients’ and families’ wishes are central to the care process.
Effective communication, advanced care planning, and a comprehensive approach can lead to improved outcomes for individuals navigating challenging health journeys. Addressing mental health concerns and integrating psychological support into palliative care practices can significantly influence patients’ experiences, ultimately fostering dignity and grace during the end-of-life transition.

References

1. American Psychological Association. (2017). Resolution on Palliative Care and End-of-Life Issues. Retrieved from https://www.apa.org/about/policy/palliative-care-eol
2. American Bar Association. (n.d.). Tool Kit for Advance Care Planning. Retrieved from http://www.americanbar.org/groups/law_aging/resources/advance_care_planning_tool_kit.html
3. Aging with Dignity. (n.d.). Five Wishes. Retrieved from https://www.fivewishes.org
4. Carpenter, B. D. (2015). Geropsychological practice with people near the end of life. In P. A. Lichtenberg & B. T. Mast (Eds.), APA handbook of clinical geropsychology (Vol. 2, pp. 469-487). Washington, DC: American Psychological Association.
5. Kelley, A. S., & Morrison, R. S. (2015). Palliative care for the seriously ill. The New England Journal of Medicine, 373, 747-755.
6. Kasl-Godley, J. E., King, D. A., & Quill, T. E. (2014). Opportunities for psychologists in palliative care: Working with patients and families across the disease continuum. American Psychologist, 69(4), 329-342.
7. National Consensus Project for Quality Palliative Care. (2018). The Clinical Practice Guidelines for Quality Palliative Care (4th ed.). Retrieved from http://www.nationalconsensusproject.org
8. Wright, A. A., Zhang, B., Ray, A., Mack, J. W., Trice, E., Balboni, T., et al. (2008). Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA, 300(14), 1665-1673.
9. World Health Organization. (2019). WHO Definition of Palliative Care. Retrieved from https://www.who.int/health-topics/palliative-care
10. VitalTalk. (n.d.). Tips for Breaking Bad News. Retrieved from https://www.vitaltalk.org
This in-depth exploration highlights the multifaceted nature of palliative and end-of-life care, stressing the essential role of mental health professionals in enhancing both the quality of life and treatment satisfaction among older adults.