Palliative and End-of-Life Care

Overview

Palliative care and end-of-life (EOL; also called “hospice”) care are two similar yet distinct approaches that are used to improve individuals’ comfort and/or quality of life. Speech-language pathologists (SLPs) can be part of interprofessional teams that incorporate either approach. SLPs work with individuals and their care partners to address swallowing, functional communication, and cognitive communication needs. SLPs may provide palliative and EOL care to individuals of any age or clinical diagnosis.

Palliative and EOL-related clinical decision making requires providers to be familiar with the impact of ethical (see ASHA Code of Ethics), personal (e.g., religious, cultural, and emotional factors, and social determinants of health), legal, and policy issues on individuals’ and care partners’ access to and utilization of services. Considerations for treatment of individuals on palliative or EOL care can differ from considerations for individuals involved in traditional rehabilitative or habilitative care. It is important to be aware that the goals of medicine and rehabilitation and the provider’s risk–benefit analysis of treatment may not always be in line with the individual’s wishes and quality of life.

Palliative Care

Palliative care is a practice that allows flexibility in individual care by giving special consideration to comfort and quality of life while still allowing treatment to continue. Referral to palliative care may be made as early as diagnosis. The goal of palliative care is to support individuals with any chronic and/or life-threatening condition with a focus on maximizing comfort, decreasing stress/burden, providing relief from symptoms, and maximizing quality of life. These goals can be supported in curative/rehabilitative approaches regardless of the medical diagnosis and do not require a terminal classification. This palliative care paradigm was established by the World Health Organization (WHO) in 2020. See also the document, Clinical Practice Guidelines for Quality Palliative Care [PDF], by the National Consensus Project for Quality Palliative Care, for more information.

An individual’s participation in palliative care does not necessarily mean that the individual is at the EOL. Palliative care may transition to EOL care depending on the disease progression, the recommendations of the medical team, and the choice of the individual/care partner. The SLP’s role in palliative care is dependent upon the individual’s diagnosis, the individual and care partner’s wishes, and at what point in the individual’s illness trajectory the SLP consultation occurs.

Palliative care can be provided at the same time as restorative efforts, but as a disease progresses, curative efforts may decrease and palliative efforts may increase. Individuals in palliative care may make decisions that are in opposition to a provider’s recommendations. Such decisions may represent an individual’s effort to regain a sense of normalcy, maintain a sense of control, and/or seek comfort. SLPs support individuals in informed decision making by providing education on swallowing, functional communication, and cognitive communication as appropriate.

End-of-Life Care

End of life (EOL) care (also known as hospice care) is a type of palliative care that is provided to individuals with terminal illnesses toward the end of the disease course. The goal of SLP intervention for EOL care is not rehabilitative; it is to improve or maintain quality of life. EOL care is typically provided to individuals for whom curative care is either not an option or not desired by them or those making health care decisions on their behalf. EOL care planning is based on the individual’s advanced directives, when available. SLPs educate individuals with terminal illnesses, care partners, and other team members on cognitive, swallowing, and communication deficits and on intervention approaches to optimize quality of life by addressing the needs and wishes of the individual and their care partners.

The pattern of functional decline in individuals at the EOL depends on the person’s diagnosis. In some cases, the decline may be very gradual until the last few months or weeks of life, as in some cancers. In other cases, such as dementia, the decline may be inconsistent over a long period of time. See also the Practice Portal’s pages on Head and Neck Cancer and Dementia for specific discussion of EOL issues for these diagnoses.

An individual may receive end-of-life benefits through hospice under Medicare if a physician can certify that an individual is terminally ill with an anticipated life expectancy of 6 months or less.

Swallowing

Eating and drinking are essential elements of a person’s quality of life. Decisions related to oral and non-oral feeding consider the whole person—beyond the medical diagnosis. Dysphagia treatment typically focuses on swallowing safety and efficiency, rehabilitative care, and compensatory strategies. These treatment approaches may also be used in palliative care; however, treatment may prioritize the individual’s level of comfort and quality of life over risk of adverse outcomes if the individual and/or care partner wishes. Dysphagia treatment in EOL is not restorative and typically serves to provide recommendations to maximize the individual’s comfort.

Individuals’ quality of life is impacted by the ability to socialize at mealtimes, and eating has religious/cultural/spiritual significance in many cultures. These considerations may take priority over nutritional support for individuals in palliative or EOL care.

Dysphagia-related services in palliative and EOL care may include one or more of the following (this list is not exhaustive):

• development of a therapeutic oral care program
• recommendation of oral diet textures and liquid consistency that prioritize the individual’s comfort and enjoyment despite a clinically identified associated increase in risk of choking or aspiration (also known as risk feeding, pleasure feeding, or comfort feeding)
• discussion of clinical risks and benefits associated with following diet recommendations during the process of informed decision making and consent related to risk feeding
• selection and training of strategies to manage dysphagia symptoms with the goal of improving individuals’ satisfaction in the eating process
• instruction in compensatory strategies that maximize swallow safety and efficiency for oral feeding
• involving the individual and their care partner in the swallowing/eating decision-making process and providing consultation to the team—including any recommendation to consider alternative nutrition
• facilitating opportunities for positive feeding interactions between individuals and their care partners, including a discussion of meal timing to allow care partners to be present.

Decision making for swallowing involves and informs individuals and/or care partners and promotes the autonomy of individuals in palliative and EOL care to make their own risk–benefit decisions. SLPs may choose to involve the physicians when making challenging decisions about diets. Such involvement allows for a collaborative approach that benefits the individual.

Functional Communication

Clinicians providing palliative and/or EOL care aim to maximize the communication capacity of individuals to the medical team, care partners, and loved ones by all appropriate means. Functional communication needs are highly dependent on the nature of an individual’s disease—as well as daily fluctuations in their ability and their level of alertness/fatigue. The expected outcome of intervention is not that the individual’s abilities will improve but that they will be able to use the abilities they still possess to interact with friends and care partners.

Both auditory comprehension (e.g., to better understand the scope of the terminal condition) and expressive communication (e.g., to indicate wants, needs, and emotional, spiritual, and physical concerns related to death and dying) are critical to functional communication in palliative and EOL care. The ability to functionally communicate is critical to (a) improving individuals’ quality of life and (b) enabling them to participate in activities of daily living, as appropriate.

Individuals may have difficulty communicating due to poor breath support, intubation, deconditioning, hearing loss, or cognitive and/or language deficits, among other factors. SLPs may assist with alternative and/or augmentative communication strategies/devices to enable individuals to express their wants and needs and may assist the team by facilitating conversations with the individual about their goals of care. Please see the section on “end-of life considerations” in the Practice Portal page on Augmentative and Alternative Communication for further information.

Audiologists are specialists in identifying and addressing hearing loss. They can educate team members on technologies that can be used to aid communication with individuals with hearing loss if desired and appropriate. Audiologists may suggest the use of hearing technology to facilitate communication in the presence of hearing loss.

Cognitive Communication

SLPs in palliative care may play a role in either restorative treatment or instruction in compensatory strategies for individuals with cognitive-communication deficits. The individual and/or care partner should be included when discussing whether to focus on restorative treatment, instruction in compensatory strategies, or both. Appropriateness of either approach depends on the type and course/stage of the individual’s disease, their current abilities, care partner support, and potential limitations of their environment. Cognitive-communication treatment at the EOL may focus on education and/or the use of compensatory strategies—and rarely involves restorative treatment. Determining an individual’s capacity for decision making is a complex legal and ethical issue to which SLPs can meaningfully contribute. For further reading please see The ASHA Leader articles, “Consent, Refusal, and Waivers in Patient-Centered Dysphagia Care” and “Help Me Tell You What I Want.”

Cultural Considerations in Counseling

SLPs educate individuals and their care partners on the risks and benefits of swallowing and communication intervention. It is critical to respect the wishes of the individual and their care partners and to prioritize social, religious, and cultural influences when considering EOL issues. Social dynamics within cultures (e.g., which demographic has the most influence within a culture) may heavily influence decision making related to intervention or case management. Please see ASHA’s webpages, Counseling for Professional Service Delivery and Trauma-Informed Care for further information.

SLPs need to understand the process of dying and how it is viewed within an individual’s social, religious, and cultural communities to better understand the emotional and psychological issues faced by individuals and their care partners. SLPs also (a) consider that the goals of care partners and/or the medical team may differ from those of the individual and (b) prioritize the individual’s preferences.

Individuals at the EOL and their care partners experience a variety of emotions, and it is important that SLPs recognize and accommodate this—and refer to other disciplines (e.g., mental health professional, child life specialist) when appropriate. SLPs assess the individual’s understanding of their disease process by speaking with them and their care partners. SLPs use information gathered from those interviews to determine how much information each individual wishes to know before discussing details of the disease process. Information is provided simply, compassionately, and without the use of jargon. SLPs verify the individual’s understanding after providing any new information.

Service Types/Locations

Palliative care may be provided in many different locations (e.g., in hospitals, at nursing homes, or at home). EOL treatment can be provided at these same locations or in unique settings called hospice centers.

Palliative care programs and treatment teams can differ by facility, and the timing of the SLP’s involvement in the plan of care may vary accordingly.

Individuals receiving palliative or EOL care may be located in remote regions where they have limited access to in-person providers. Telepractice may be helpful to meet the needs of these individuals. For further information, see ASHA’s Practice Portal page on Telepractice as well as ASHA’s resources on payment and coverage of telepractice services and ASHA state-by-state.

Payment Considerations

Individuals may have insurance coverage for palliative or EOL care. Coverage criteria and payment rates for private insurance plans and state Medicaid programs can vary widely, so it is important to check with these payers directly to determine how to proceed before initiating services. This enables individuals and their care partners to make informed choices.

Medicare covers speech-language pathology services if the intent of the service is to improve or maintain function for the individual. The maintenance of function criteria is particularly important for individuals with palliative or EOL care needs who might be receiving therapy services. The only setting where improvement is required by Medicare is inpatient rehabilitation facilities. Medicare offers a hospice benefit that includes coverage of speech-language pathology services; however, the individual must meet qualifying criteria. Individuals need to be aware that although Medicare may cover related audiology services, the program does not include hearing technologies as a benefit.

Coding

Coding for evaluation and treatment services is typically accomplished using the same diagnosis and procedure codes, regardless of the individual’s stage of care or treatment goals (e.g., curative/restorative vs. quality of life). See ASHA’s coding and payment webpages for a full list of speech-language pathology–related diagnosis and procedure codes. It is also important to verify payer coverage of specific diagnosis and procedure codes before initiating services so individuals and their care partners can make informed choices.

Please contact reimbursement@asha.org for specific questions regarding coding and payment for palliative and EOL care.

ASHA Resources

• Alternative Nutrition and Hydration in Dysphagia Care
• ASHA State-by-State
• Code of Ethics
• Consent, Refusal, and Waivers in Patient-Centered Dysphagia Care
• Help Me Tell You What I Want
• Social Determinants of Health
• Trauma-Informed Care
• Speech-Language Pathology Billing Codes
• Payment and Coverage of Telepractice Services

Other Resources

• American Academy of Hospice and Palliative Medicine
  • Position Statement on Artificial Nutrition and Hydration Near the End of Life
• American Hospital Association—Palliative Care
• American Medical Association: Caring for Patients at the End of Life
• Center to Advance Palliative Care
• CMS—Hospice
• Medicare
  • Coverage of Hospice Services Under Hospital Insurance.
  • Frequently Asked Questions (FAQs) Regarding JIMMO Settlement Agreement
  • Hospice Care
• National Association for Home Care and Hospice
• National Consensus Project: Clinical Practice Guidelines for Quality Palliative Care [PDF]
• National Hospice and Palliative Care Organization
• Supporting a Good End of Life [PDF]
• United Nations—The Right to End-of-Life Palliative Care and a Dignified Death
• World Health Organization Palliative Care Fact Sheet

References

Amblàs-Novellas, J., Murray, S. A., Espaulella, J., Martori, J. C., Oller, R., Martinez-Muñoz, M., Molist, N., Blay, C., & Gómez-Batiste, X. (2016). Identifying patients with advanced chronic conditions for a progressive palliative care approach: A cross-sectional study of prognostic indicators related to end-of-life trajectories. BMJ Open, 6(9): Article e012340. https://doi.org/10.1136/bmjopen-2016-012340

American Academy of Hospice and Palliative Care Medicine. (2013). Statement on artificial nutrition and hydration near end of life. http://aahpm.org/positions/anh

Belanger, E., Bélanger, E., Rodríguez, C., & Groleau, D. (2011). Shared decision-making in palliative care: A systematic mixed studies review using narrative synthesis. Palliative Medicine, 25(3), 242–261. https://doi.org/10.1177/0269216310389348

Cassel, E. (1982). The nature of suffering and the goals of medicine. New England Journal of Medicine, 306(11), 639–645. https://doi.org/10.1056/NEJM198203183061104

Center to Advance Palliative Care. (n.d.). Clinical training recommendations for speech-language pathologists caring for patients with serious illness. https://www.capc.org/clinical-training-recommendations-for-all-clinicians-caring-for-patients-with-serious-illness/clinical-training-recommendations-for-speech-language-pathologists-caring-for-patients-with-serious-illness/

Groher, M. E., & Peutz Groher, T. (2012). When safe oral feeding is threatened. Topics in Language Disorders, 32(2), 149–167. https://doi.org/10.1097/TLD.0b013e3182543547

The Joint Commission. (2010). Advancing effective communication, cultural competence, and patient- and family-centered care: A roadmap for hospitals. https://www.jointcommission.org/-/media/tjc/documents/resources/patient-safety-topics/health-equity/aroadmapforhospitalsfinalversion727pdf [PDF]

Krikheli, L., Mathisen, B. A., & Carey, L. B. (2018). Speech-language pathology in paediatric palliative care: A scoping review of role and practice. International Journal of Speech- Language Pathology, 20(5), 541–553. https://doi.org/10.1080/17549507.2017.1337225

Lambert, H. (2012). The allied health care professional’s role in assisting medical decision making at the end of life. Topics in Language Disorders, 32(2), 119–136. https://doi.org/10.1097/TLD.0b013e318254d321

Leslie, P., & Casper, M. (2015). Ethical challenges: Less about moral wrongdoing and more about communication breakdown. Perspectives on Gerontology, 20(3), 72–84. https://doi.org/10.1044/gero20.3.72

Mallia, P. (2010). Clinical intervention in aging: Ethicolegal issues in assessing risk and benefit. Clinical Interventions in Aging, 5, 373–380. https://doi.org/10.2147/CIA.S15001

Meier, D. (2009). Finding my place. Journal of Palliative Care Medicine, 12(4), 331–335. https://doi.org/10.1089/jpm.2009.9644

Meier, D. E., Back, A. L., Berman, A., Block, S. D., Corrigan, J. M., & Morrison, R. S. (2017). A national strategy for palliative care. Health Affairs, 36(7), 1265–1273. https://doi.org/10.1377/hlthaff.2017.0164

National Consensus Project for Quality Palliative Care. (2018). Clinical guidelines for quality palliative care (4th ed.). National Coalition for Hospice and Palliative Care. https://www.nationalcoalitionhpc.org/wp-content/uploads/2020/07/NCHPC-NCPGuidelines_4thED_web_FINAL.pdf [PDF]

Pollens, R. (2004). Role of the speech-language pathologist in palliative hospice care. Journal of Palliative Medicine, 7, 694–702.

Pollens, R. (2012). Integrating speech-language pathology services in palliative end-of-life care. Topics in Language Disorders, 32(2), 137–148. https://doi.org/10.1097/TLD.0b013e3182543533

The Royal College of General Practitioners. (2019). Silver Book—Part A: Palliative and end-of-life care. https://www.racgp.org.au/clinical-resources/clinical-guidelines/key-racgp-guidelines/view-all-racgp-guidelines/silver-book/part-a/palliative-care

Smith, P. (2020). Palliative care in dysphagia and dementia. Perspectives of the ASHA Special Interest Groups, 5(2), 506–510. https://doi.org/10.1044/2020_PERSP-19-00038

-World Health Organization. (2020). Palliative care fact sheet. https://www.who.int/news-room/fact-sheets/detail/palliative-care

Xia, J. B. (2020). The obligation of listening: Caring for patients with chronic dysphagia through illness narratives. Perspectives of the ASHA Special Interest Groups, 5(1), 231–235. https://doi.org/10.1044/2019_PERSP-19-00030