End-of-Life Issues in Speech-Language Pathology
Many speech-language pathologists (SLPs) working in health care will, at some time, be presented with a patient nearing the end of life. These patients introduce complex clinical and ethical issues around feeding and communication that impact the role of the SLP and other health care professionals. SLPs are an integral member of the health care team and contribute significantly to the care of patients nearing end of life.
Patients Nearing End of Life
Data from the National Center for Health Statistics regarding hospice care patients indicates the following:
- There were over 100,000 patients in the hospice care system in 2000. Of those, over 85,000 (81%) were over the age of 65.
- The average length of stay for these patients was 129 days.
- 18% of patients were in a health care facility (nursing home, hospital, or other inpatient facility).
- Alzheimer's disease was the primary diagnosis for 8% of patients (cancer was the primary diagnosis for most hospice patients [53%]).
- 9,000 patients (almost all over the age of 65) received at least one of the following therapies: speech-language pathology, physical therapy, or occupational therapy.
- Over 36,000 patients received assistance with eating (no distinction was made between self-feeding issues and swallowing problems).
- Approximately 6,000 patients received enteral feedings.
- Over 24,000 patients were identified as having some degree of hearing impairment.
Role of the SLP
When an SLP is brought in to work with a patient nearing end of life, swallowing is typically the primary concern. Facilitating communication abilities may also be addressed. Some questions facing the SLP include:
What role does the SLP play in managing patients nearing end of life and should SLPs provide services to this population? If so, in what capacity and for what outcome?
SLPs contribute to the overall quality of life of patients nearing end of life. The goal of intervention at this point is not rehabilitative, but facilitative. If a patient has swallowing difficulty, for example, the SLP works with the patient and caregivers to develop compensatory strategies that will allow the patient to eat orally for as long as possible. The SLP may also be asked to participate in team decision-making regarding the use of alternative nutrition (e.g., tube feeding) (Landes, 1999). If the patient has difficulty speaking due to impaired breath support or deconditioning, the SLP helps develop an alternative communication strategy that will allow the patient to express his wants and needs effectively. Again, the expected outcome of intervention at this point is not necessarily that the patient's abilities will improve, but that they will be able to use the abilities they still possess to interact with family and friends and/or enjoy favorite foods, if that is their wish.
What does the SLP need to know about end-of-life issues to work most effectively with this population?
SLPs need to understand the process of dying to better understand the emotional and psychological issues faced by their patients. Family members will also experience a variety of emotions and it is important that the SLP recognize this and react accordingly. Some resources and readings on understanding end stage disease and dying include:*
- How We Die by Sherwin B. Nuland
- Death and Dignity by Timothy Quill
- Dying Well by Ira Byock
- Handbook for Mortals by Joanne Lynn
- Meetings at the Edge: Dialogues With the Grieving and the Dying, the Healing and the Healed by Stephen Levine
*This list is not intended to be exhaustive and includes recommendations from ASHA members and others with expertise in end-of-life issues.
Pattern of decline at end of life
The pattern of functional decline in individuals at the end of life varies, depending 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. For more information, refer to the following article:
Lunney, J. R., Lynn, J., Foley, D.J., Lipson, S., & Guralnik, J. M. (2003). Patterns of Functional Decline at the End of Life [PDF]. Journal of the American Medical Association, 289(18), 2387–92.
There are many issues surrounding feeding and swallowing management at end of life. For a review of some of these issues, see The ASHA Leader articles, Managing Dysphagia in the Adult Approaching End of Life and Frail Elders and Failure to Thrive.
Additional resources on swallowing and end-of-life:
Patient and family considerations
It is of utmost importance to respect the wishes of the patient and family when considering end-of-life issues. Social and cultural influences must be recognized and respected, as well. The role of the SLP extends only as far as the patient or family wishes and the SLP needs to understand that what they think may be best for the patient clinically may not always be accepted as best for the patient's quality of life. JCAHO's 2004–2005 Ethics, Rights, and Responsibilities Standards address this issue in Standard RI.2.80, "The organization addresses the wishes of the patient relating to end of life decisions." (JCAHO, 2004).
For a discussion of patient wishes at end of life, read the Ethics Roundtable Case Study.
Additional references on patient and family considerations:
Can SLPs get reimbursed for services provided to this population?
Medicare provides a hospice benefit to terminally ill patients who choose this benefit when their physician certifies that they have six months or less to live. If the patient lives beyond six months, however, the benefit does not end. For more information see the Fast Fact and Concept #082: Medicare Hospice Benefit Part 1: Eligibility and Treatment Plan from the End of Life/Palliative Care Resource Center.
Hospice benefits include speech-language pathology services "for purposes of symptom control or to enable the individual to maintain activities of daily living and basic functional skills" (Sec. 230.1.I of the Medicare Hospice Manual). There are different levels of care for hospice with differing per diem payment rates.
In addition, Medicare has alerted claims reviewers that they cannot automatically deny a claim based on a diagnosis of dementia. This allows for the provision of reasonable and necessary skilled services to those patients with dementia who can benefit from them.
Continue to End of Life Resources and References.