Most speech–language pathologists (SLPs) did not enter the profession thinking they would be working with patients who are dying. In fact, most remember vividly their first patient who died. How a clinician responds to a patient's death is influenced by factors such as personal experiences with death, expectations for the patient, and understanding of the dying process. Personal reactions to death may lead some SLPs to choose a career path they believe will minimize their exposure to high-risk patients, particularly adults near life's end, although other career tracks might engage them with children or adolescents who also face terminal illnesses. While coping with the death of a pediatric patient is an important topic on its own, this issue of Topics in Language Disorders (TLD) focuses on what SLPs need to know about end-of-life issues when working with adults. The content emphasizes the roles and perspectives of SLPs. However, the interdisciplinary nature of end-of-life care is reflected in contributions of authors from multiple disciplines (e.g., speech–language pathology, occupational therapy, and medical ethics).
For SLPs who choose to work in sites such as nursing homes, home health care, and acute care hospitals, patient death may be a frequent occurrence, and illnesses that ultimately prove fatal do require the services of an SLP at some point. To provide optimal services, SLPs must be aware that dying often involves a process. Emotional, cognitive, and physical changes associated with the dying process can signal transitions that will affect professional interactions and decisions.
Unfortunately, many SLPs do not feel adequately prepared for these events. Academic professional preparation programs in speech–language pathology often encourage their students to take courses such as “Death and Dying” as electives. These courses frequently describe the dying process from a sociological or psychological viewpoint. Typically, the courses provide exposure to concepts such as stages in accepting loss and cultural differences associated with views of death and dying.
It is unusual for speech–language pathology graduate programs to provide a specific course or a cohesive discussion of the dying process as it relates to communication and swallowing disorders. Instead, dying is usually discussed as it relates to specific disorders and ethical responsibilities in providing treatment. The influence of imminent death on professional practice may be addressed most commonly in dysphagia courses when the ethical question of feeding a dying person who cannot swallow safely arises. The progression toward death may also be addressed indirectly in courses covering the effects of cancer or progressive neurological disorders on speech, language, or cognition.
Even with appropriate academic training, it is unlikely that the true impact of the professional's role in working with patients at the end of life can be understood without personal experience. As a result, SLPs may enter clinical practice without a clear understanding of how the end of life affects patient and family decision making and how choices may change as death approaches. It becomes the professional's responsibility to gain the information needed regarding the SLP's role and responsibilities as a patient's disease progresses toward death. Speech–language pathologists cannot afford to be ignorant of the realities of dying when patients or family members ask questions or other professionals rely on their input.
Over the past two decades, organized end-of-life care (particularly palliative and hospice care) has become more common. Over a similar time interval, the knowledge and tools available to SLPs have made it possible for them to help dying individuals communicate and maintain nutrition for much longer than was previously possible. As a result, opportunities for involvement in end-of-life care have increased markedly. Numerous publications are available to address general services for dying people and their families, but relatively few publications exist that address the specific roles and responsibilities of SLPs in end-of-life care. The American Speech-Language-Hearing Association (ASHA, n.d.) has responded with development of a series of end-of-life professional resources (http://www.asha.org/slp/clinical/endoflife/). Although the literature addressing their role remains limited, it is clear that SLPs often provide pivotal input regarding communication and swallowing that can affect the quality of the final months and days of a person's life.
End-of-life care usually involves an interdisciplinary team of health care providers working closely with the patient and family members. To be an effective member of such a team, SLPs must understand more than just their own professional practices. Speech–language pathologists may be engaged in a variety of aspects of end-of-life care at different times in the disease progression. For example, they may be called in soon after a terminal diagnosis to provide clients and families with needed information and to help all parties plan for anticipated changes in communication and swallowing.
Speech–language pathologists may also be involved late in the disease process if they are asked to assist family or health care providers with evaluations of the client's cognitive status.
The numerous SLP roles may include:
- assessing feeding and swallowing;
- facilitating ethical and informed decision making regarding feeding and hydration;
- making decisions about the appropriateness of treatment of specific communication disorders, as well as when such treatment is no longer appropriate;
- facilitating communication between the patient, family members, health care providers, and others;
- identifying needed changes in communicative content and strategies across the dying process to help patients communicate their wishes; and
- assessing and providing input, as appropriate, concerning changes in cognitive capacity.
To be effective in these roles, SLPs need to understand the dying process (including anticipated changes in communication, cognition, and eating); the types of services available at end of life (and roles of various health care providers); and the legal and ethical considerations that govern end-of-life care and decision making. Speech–language pathologists must also be knowledgeable about the range of communicative options for terminal patients and the types of communicative messages that take priority at this point in the life cycle.
This issue of TLD focuses on basic end-of-life care considerations faced by dying individuals, their family members, and the health care team and on the two primary areas where SLPs play a role in end-of-life care: communication and feeding/swallowing. Interdisciplinary information is provided in a variety of formats, including literature review, case studies, and original research data.
The issue opens with an overview by Toner and Shadden (2012) of basic facts about dying, end-of-life, and speech–language pathology services in this context. The material is provided in a “Frequently Asked Questions” (FAQ) format. These FAQs were developed for two reasons. First, as issue editors, we felt a need for clarification of core terms and services that are referenced in subsequent articles and that appear frequently in the literature on end-of-life care. Second, the actual dying experience is unfamiliar to anyone who has not been at the bedside of a dying individual. If practitioners choose to become involved with end-of-life care, they must have some basic understanding of end-of-life terms and processes to be able to communicate with others on the team and/or to provide guidance to clients and family members. The overview also acknowledges other important considerations in end-of-life service delivery, specifically multicultural differences in perspectives on death and dying, and compassion fatigue.
The next article, contributed by an occupational therapist, Lambert (2012), sets the stage for the remaining discussions of end of life by describing the types of medical decisions that may need to be made and possible barriers to decision making. Lambert identifies the legal documents that can be created to ensure compliance with a person's wishes (Advance Directives) and introduces the idea of proxies, who are individuals designated to make decisions for a person if he or she is unable to do so for himself or herself. Lambert focuses on the decision-making process and on how to facilitate planning for future care, highlighting motivational interviewing as a valuable facilitation tool. Essentially, she advocates for health care professional involvement in the decision-making process and in interpreting patient wishes.
Speech–language pathologists can be involved in end-of-life care through participation on palliative care teams. In the third article, Pollens (2012) describes how SLPs can frame goals and outcomes in terms of the palliative end-of-life model of care as contrasted with a more traditional impairment-based approach to rehabilitation. She provides practical recommendations about effective communication with the palliative care team regarding SLP roles and involvement. Pollens also discusses basic strategies designed to tailor SLP services to end-of-life circumstances. Finally, she explains that opportunities to serve this clinical population can be enhanced by increasing SLP professional visibility (e.g., attending palliative care conferences, doing workshops in the workplace or for a local chapter of organizations such as the Alzheimer's Association or Amyotrophic Lateral Sclerosis Association).
Groher and Groher (2012) combine the expertise of a speech-language pathologist and a nurse practitioner to tackle the difficult issue of oral feeding and swallowing options at the end of life. Their article provides an overview of the various feeding options available and discusses the available research on the benefits of management strategies balanced with the risk of aspiration pneumonia. The article is not intended to provide a comprehensive guide to managing feeding and swallowing as the end of life approaches but instead to provide an overview for readers less familiar with these concepts. Although TLD generally addresses topics related to language problems among children, adolescents, and adults (and not swallowing disorders), it is likely that clinicians working with linguistically and cognitively impaired adults facing end of life will have to deal with issues of feeding and swallowing along with their communication needs. A primary purpose of the article by Groher and Groher is to draw attention to the ethical concerns common to SLPs who make feeding and swallowing recommendations for terminally ill patients. For example, if a patient nearing the end of life aspirates but chooses to continue eating, is it ethical for the SLP to make recommendations that facilitate oral feeding? Another challenging circumstance is when the patient's Advance Directive has specified that no artificial methods are to be used to prolong life, but family members are concerned that the patient is suffering due to starvation and dehydration. Because there is no single “best” answer, the authors provide a number of cases to illustrate the complexity of individual situations and the need for unique responses to each case.
The final article, by Brownlee and Bruening (2012), with credentials as an assistive technology specialist and an SLP, respectively, presents research on communication modalities used by persons with amyotrophic lateral sclerosis (PALS). Because many people with ALS eventually lose the ability to communicate through natural speech, it may be assumed that an electronic communication device is always the best solution. The authors developed a survey that probed perceptions of the caregivers (after the family member with ALS has died) regarding communication topics, experiences, and strategies used by the PALS when attempting to communicate with different individuals at three time intervals preceding death. Changes in communicative strategy were evident across the last 6 months of life. This study highlights the need for ongoing research on augmentative and alternative communication (AAC) use by this population at various phases of the illness and on the factors influencing use of varied forms of AAC, including adequate services by SLPs related to selection and use of any devices, during the months before death. The authors emphasize the need to consider simple, effective communication strategies at end of life.
Collectively, the articles in this issue of TLD describe ways in which SLPs play critical roles in contributing to quality of life for adult patients who are dying and for their family members, in direct service, and as members of interdisciplinary teams. The central premise in each article is that SLPs' knowledge of feeding/swallowing, cognition, and communication can make them uniquely qualified to assist with some of the most important end-of-life challenges. We hope this issue of TLD is thought-provoking and raises questions for readers about their involvement in clinical practice with those confronting end of life.
—Mary Ann Toner
—Barbara B. Shadden
University of Arkansas