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.
Data from the National Center for Health Statistics regarding hospice care patients indicates the following:
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:
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.
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:*
*This list is not intended to be exhaustive and includes recommendations from ASHA members and others with expertise in end-of-life issues.
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. A resource on swallowing and end-of-life:
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).
Additional references on patient and family considerations:
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.