Presence Learning Therapy Tools Suite - November 2019

Interview with Carol Monteleoni, Speech Language Pathologist, Lenox Hill Hospital, New York

January 30, 2006

Beck:Good Morning Carol. Thanks so much for spending a little time with me today.Monteleoni:Hi Doug. Thanks for inviting me! Beck:Carol -- it's a pleasure to speak with you. Before we get to the topic at hand, I was hoping you wouldn't mind spending a moment or two reviewing where you went to school
Beck:Good Morning Carol. Thanks so much for spending a little time with me today.

Monteleoni:Hi Doug. Thanks for inviting me!

Beck:Carol -- it's a pleasure to speak with you. Before we get to the topic at hand, I was hoping you wouldn't mind spending a moment or two reviewing where you went to school, when you graduated, and how long you've been at Lenox Hill?

Monteleoni:Sure. My undergraduate degree is in biology, which I earned at Harvard in 1967. My master's in communication sciences was from Hunter College in New York and I earned that in 1992. I've been at Lenox Hill Hospital, where I'm the coordinator of speech-language pathology services, since 1995.

Beck:Thanks Carol. I know that at the 2005 ASHA Convention you had an excellent presentation on the SLP's involvement with the palliative care team. So, let's start with your definition of "Palliative Care" please?

Monteleoni:Sure, Doug. Palliative Care is a model for providing care to seriously ill patients as they approach the end of life. The focus is on relief of pain and suffering, not only physical, but also spiritual and emotional, to insure that patients and those who love them will have the best possible quality of life as long as the patient remains alive. Palliative care begins when diagnosis of a terminal condition is made, and is provided along with curative care. When curative treatments are no longer effective, palliative care is the primary type of care provided. Palliative care can be provided at home, in acute care or long term hospital settings, as well as in hospices.

Beck:Thanks, that's a great functional definition. Which patients in need of palliative care, would the SLP be involved with?

Monteleoni:Speech pathologists work with a huge variety of patients with advanced illness. The population spans the age range from pediatric to geriatric, and the diagnoses include cancer, neurological disease, dementia and trauma, as well as organ system failure such as heart failure, respiratory failure and renal failure.

Beck:And what are the primary issues the SLP faces, as far as the one-on-one care the SLP provides?

Monteleoni:Speech pathologists work to improve the patients' ability to communicate and swallow. For patients at the end of life, communication is crucial to maintaining quality of life, both for expressing needs and for achieving closure with loved ones. Swallowing function is also frequently impaired in patients with end-stage illness.

Beck:Thanks, and specifically, how does this impact the SLP?

Monteleoni:The SLP is called upon to evaluate patients with swallowing dysfunction, and decisions on feeding management are often made based on the speech pathologist's assessment. For terminal patients with swallowing dysfunction, there is often no "solution" to the swallowing problem, because it is, in fact, a manifestation of the patient's end-stage condition. Doctors will sometimes order tube feedings for these patients based on a speech pathologist's finding of swallowing dysfunction.

Beck:Carol, I know from my readings that feeding tubes have often been that still correct?

Monteleoni:Yes, unfortunately, it is a big issue. There is a growing body of evidence that, in patients with many types of advanced disease, feeding tubes do not prevent aspiration, improve functional status, heal pressure sores, reverse the disease process, or prolong life. There are also definite medical risks associated with tube feeding which can increase the patient's suffering and impair the quality of life. Speech pathologists need to be very familiar with the evidence-based literature, because not all physicians are aware of the many issues surrounding tube feeding, and will take a speech pathologist's finding of dysphagia as a green light to place a tube, even when it is not in the patient's best interest.

Beck:What is the role of the palliative care team in decision-making about feeding management at the end of life?

Monteleoni:Palliative care teams, which are multidisciplinary and can include physicians, nurses, psychologists, social workers, pastoral care professionals and others, are extremely helpful in working with patients and families to define and implement the goals of care in the final stages of illness. The team is able to intervene and support the medical staff in informing the patient and family about options in end-of-life care. There are a number of barriers to physicians doing this difficult work without the support of a palliative care team. Among the barriers are lack of training in end-of-life care and appropriate communication skills, the medical culture's tendency to see death as a medical failure, personal biases which may affect treatment approaches, lack of time for the intensive support and counseling needed by dying patients and their families, and institutional pressures to reduce length of stay.

Beck:And as far as a nursing home or an extended care facility might be concerned, I suspect the patient with a feeding tube commands a larger daily reimbursement than does the exact same patient without a feeding tube, and of course, the patient with the feeding tube requires less one-on-one feeding, meaning less professional personnel involved with their day-to-day care?

Monteleoni:Yes, this is a very important ethical issue. Unfortunately, the current healthcare reimbursement system in the US provides financial incentives for nursing homes to favor patients with feeding tubes, which, as we've discussed before, is not always the best medical care. The more the general public and the medical community are aware of these issues, the likelier we are to see change in this area. Speech pathologists have a pivotal role in educating their medical colleagues and patients about the issues.

Beck:Very good points, Carol. This is fascinating work you're involved with.

Monteleoni:It's definitely challenging, but has been a great opportunity to work with
interested professionals from speech pathology and other disciplines. At ASHA this year I was privileged to co-present with William Plonk, MD, a geriatrician and palliative care physician, Stefanie Schwartz, PhD, a psychologist and head of an acute care hospital palliative care team, and Julie Cionfolo, MS MBA, a speech pathologist and head of rehabilitation in an acute care hospital. We all brought different perspectives to the table, and the audience response was lively and extremely valuable.

Beck:Carol...we don't usually do this, but if you wouldn't mind, I'd be very appreciative of a list of recommended readings and references for the interested SLP. Can I reprint some of those at the end of this interview?

Monteleoni:Absolutely. I'll give you a list of some of the relevant articles, books and internet-based resources that my colleagues and I developed for our ASHA presentation.

Beck:Very good. We'll publish the list at the end of this interview. Again, Carol, this is fascinating work. Thanks so much for sharing your thoughts and time with us.

Monteleoni:My pleasure Doug. SLPs often play a critical role in these decisions and issues, and I appreciate the opportunity to present these thoughts to the SLP community.

Beck:Thanks, Carol.

Recommended Readings, References & Websites:

Ahronheim JC. Nutrition and hydration in the terminal patient. Clin Geriatr Med 1996; 12(2): 379-391.

Curtis, JR. Communicating about end-of-life care with patients and families in the intensive care unit. Crit Care Clin 20 (2004) 363-380.

Finucane TE, Christmas C, Travis K. Tube feeding in patients with advanced dementia. JAMA.1999:282:1365-1370.

Fromme E. Should my loved one get a feeding tube? Journal of Palliative Medicine 2004:7(5):735.

Huang Z, Ahronheim JC. Nutrition and hydration in terminally ill patients: An update Clin Geriatr Med. 2000; 16:313-325.

Levy A, Dominguez-Gasson L, Brown E, Frederick C. Technology at End of Life Questioned. The ASHA Leader 2004, July 20: pp. 1, 14.

Li, I. Feeding tubes in patients with severe dementia. Am Fam Physician. 2002; 65:1605-1610.

Lynn, J, Schuster, JL. Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians. Oxford University Press, New York 2000.

McCann RM, et al: Comfort care for terminally ill patients: the appropriate use of nutrition and hydration. JAMA 1994;272:1263-6.

Meier DE, Ahronheim JC, Morris J, Baskin-Lyons S, Morrison RS. High short-term mortality in hospitalized patients with dementia. Arch Intern Med 2001 Oct 22; 161(19):2385-6.

Meier DE, Morrison RS, Cassel CK. Improving palliative care. Ann Intern Med 1997;127:225- 230.

Mitchell SL, Buchanan JL, Littlehale S, Hamel MB: Tube-feeding versus hand-feeding nursing home residents with advanced dementia: a cost comparison.
J Am Med Dir Assoc 2004;5:S22-9.

Mitchell SL, Kiely DK, Lipsitz LA. Does artificial enteral nutrition prolong the
survival of institutionalized elders with chewing and swallowing problems?
J Gerontol A Biol Sci Med Sci 1998 May:53(3):M207-13.

Mitchell SL, Tetroe JM, O'Connor AM. Making Choices: Long Term Feeding Tube Placement in Elderly Patients, a booklet and audio tape for surrogate decision makers. Ottawa, Ontario

Monteleoni C, Clark E. Using rapid-cycle quality improvement methodology to reduce feeding tubes in patients with advanced dementia: before and after study. BMJ 2004; 329: 491-494.

Murphy LM, Lipman TO. Percutaneous endoscopic gastrostomy does not prolong survival in patients with dementia. Arch Intern Med 2003 Jun 9;163(11):1351-3.

Nuland, Sherwin B. How We Die: Reflections on Life's Final Chapter. Alfred A. Knopf, Inc., New York 1994.

Pasman HRW, Onwuteake-Philipsen BD, Kriegsman DM, Ooms ME, Ribbe MW, van der Wal, G. Discomfort in nursing home patients with severe dementia in whom artificial nutrition and hydration is forgone. Arch Intern Med 2005; 165: 1729-1735.

Plonk, WM. To PEG or not to PEG: nutrition issues in gastroenterology, Series #29 Practical Gastroenterology July 2005; 16-26.

Pollens R. Role of the speech-language pathologist in palliative hospice care. Journal of Palliative Medicine. 2004: 7(5):694-702.

Solomon LD. The Jewish tradition and pulling the plug: Withholding or withdrawing medical treatment and the use of pain medication. In The Jewish Tradition and Choices at the End of Life: A New Judaic Approach to Illness and Dying. University Press of America, Maryland 2001:87-122.

Quill, Timothy E. Death and Dignity. W. W. Norton & Co., New York 1994. The American Academy of Hospice and Palliative Medicine (AAHPM) is an organization of physicians and other medical professionals dedicated to excellence in and advancement of palliative medicine through prevention and relief of patient and family suffering by providing education and clinical practice standards, fostering research, facilitating personal and professional development, and by public policy advocacy. Center for Advancement of Palliative Care is an organization which supports and facilitates establishment of palliative care programs especially in acute care hospitals. The website contains information about educational conferences and resources including a manual for developing a palliative care program. End of Life/Palliative Education Resource Center (EPERC) is a website whose purpose is to share educational resource material among the community of health professional educators involved in palliative care education. Growthhouse is a comprehensive website with links to information and resources about end-of-life care. Partnership for Caring is a non-profit organization dedicated to increasing consumer education and empowerment regarding end-of-life care. The website has information on legal and ethical issues, advance care planning and other issues surrounding dying.