The Conversation &
The Speech-Language Pathologist’s Role in Palliative Care
by Karen Sheffler, MS, CCC-SLP, BCS-S of SwallowStudy.com
Have you ever recommended to a person with dysphagia that he should AVOID thin liquid, including his favorite ice cream, and then found out that he passed away within days. I have.
But, I have also had the opposite experience: “I’m so glad I gave them their favorite ice cream yesterday!”
Evaluating swallowing in people who are critically ill is heart-wrenching. When we make recommendations we worry about the person’s health and safety, but we also wonder if we have compromised his/her/their quality of life. A better approach may be to provide options, accounting for the person’s wishes and goals of care. Sometimes extraordinary efforts to reduce all risks are not in line with the person’s idea of quality of life. This points to the need for palliative care.
People at the end of life frequently have difficulty swallowing (dysphagia), as high as 79% per a survey of relatives rating their loved ones’ in their last 72 hours (Bogaardt et al., 2015). That puts a significant burden on caregivers witnessing and managing their loved ones’ discomfort, frequent coughing, loss of appetite, problems with oral secretions, and significantly altered pyscho-social and physical well being (Bogaardt et al., 2015). Bogaardt and colleagues’ study found that the incidence of dysphagia was not only in those with cancer/malignancies, but it was actually higher in those people with non-malignant diseases (e.g., dementia, motor neuron diseases, and strokes). Additionally, people may be treated under the palliative care approach for months to several years. Therefore, we are not just talking about those in the last few days of life. The shift in a person’s care from a curative approach to a palliative approach may occur long before the involvement of Hospice and end-of-life care.
“These findings underline the importance of adequate management of swallowing problems in the palliative setting” (Bogaardt et al., 2015, page 149).
Ask a lot of questions:
Is this critically ill person nearing the end-of-life?
What is his/her/their prognosis?
Is the underlying disease(s) terminal (keeping in mind that Alzheimer’s Disease and Dementia are terminal illnesses)?
Is there a chance the dysphagia would resolve once the acute infection resolves? See the blog on how to dig for clues in the patient’s medical record.
Would a palliative care approach serve this person better than aggressive-curative care? For example, if the person’s safety and recovery are no longer the goals, ask what life goals, needs, wishes, and preferences does this person have now.
If SLPs do not ask questions, we may end up making recommendations that are overly aggressive, in order to try to prevent aspiration at all costs. If we only recommend NPO, then the family may only be offered a gastrostomy tube placement, rather than options and a conversation!
Unwanted treatment and futile care is wrongful care:
Even within Catholic teaching, “we may reject life-prolonging procedures that are insufficiently beneficial or excessively burdensome.” This quote comes from the Ethical and Religious Directives (ERDs) for Catholic Health Care Services (Part V, Introduction, page 29, https://www.usccb.org/issues-and-action/human-life-and-dignity/health-care/upload/Ethical-Religious-Directives-Catholic-Health-Care-Services-fifth-edition-2009.pdf). I had experience with these ERDs working for over 13 years at a Catholic hospital and participating in the Ethics Committee. Futile care or disproportionate care was addressed by Pope John Paul II on March 23, 2002 at a scientific congress on gastroenterology: “Extreme measures at all costs, even with the best intentions, would be, in the end, not only useless, but not fully respectful of the patient who has reach the terminal stage (Associated Press-Boston Sunday Herald, 3/24/02).”
Angelo Volandes, MD (Harvard Medical School) discussed how we have heard about futile care, but we have not addressed “unwanted care” (see link to The Atlantic article: https://www.theatlantic.com/magazine/archive/2013/05/how-not-to-die/309277/). Unwanted treatments are wrongful care, per Volandes. The American medical system can save lives with all of it’s technical prowess, but should we always be using this might? Volandes stated in the article above: “I think that’s the most urgent issue facing America today; people getting medical interventions that, if they were more informed, they would not want. It happens all the time.”
The key is good communication with the all members of the team, which always includes the patient (who is a person first) and family. When the person cannot make their own decisions, the team involves a “substitute decision-maker.” However, making an informed decision takes time. This decision-making process should slow down the push for over-medicalization in favor of a sit-down conversation. Dr. Angelo Volandes, physician, researcher and patient advocate, calls this “The Conversation.” Volandes’ research has found that the use of short standardized videos works better than verbal conversation alone. The videos show examples of patients and review “life-prolonging care,” “limited care,” and “comfort care.”
Dr. Angelo Volandes is the author of The Conversation. Check out: Dr. Volandes’ YouTube video about The Conversation. See www.AngeloVolandes.com. He is also the co-founder and president of ACP Decisions (www.acpdecisions.org).
Why are we not having The Conversation more often?
Years ago, President Obama wanted to add these consultations to the national health-care debate, in order to reward physicians for taking time to have the necessary conversations. This would have allowed Medicare to reimburse health care professionals for these lengthy person/family meetings about end-of-life care (called an “Advance Care Planning Consultation”). However, do you recall how Sarah Palin squashed the idea, calling them “death panels” on her Facebook page on 8/7/09? Palin’s post showed her lack of understanding: “The America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama’s “death panel” so his bureaucrats can decide, based on a subjective judgment of their level of productivity in society, whether they are worthy of health care.” Obama responded at a town hall meeting in New Hampshire on 8/11/09 stating: “So the intention of members of Congress was to give people information so that they would handle issues of end-of-life care when they’re ready, on their own terms. It wasn’t forcing anybody to do anything.” (See full story at www.factcheck.org/2009/08/palin-vs-obama-death-panels/)
How often are doctors still having quick discussions over the phone?
Will we continue on a path of overly aggressive and wrongful care at the end-of-life because there is no time or billing code for The Conversation?
What does this mean for the SLP who does the swallowing evaluation?
We cannot make our recommendations in a vacuum. We need to participate in a risk/benefit analysis: does the risk of aspiration/choking when eating and drinking by mouth outweigh the benefit of remaining on some form of oral intake.
The SLP should be directly involved with the medical team and palliative care team, making sure to clear up any myths and misunderstandings that may affect a clear conversation.
In the past I heard doctors say: “She does not need a swallowing evaluation, because we are not going to make her NPO anyway.” In the past, SLPs have been seen as those who only recommend NPO. We have been working for years to end that myth. SLPs have so much more to add to the conversation.
My neighbor recalled when her father was in the end-stages of CHF, and the doctor told her they were recommending thickened liquids due to an absent gag reflex! Do we want myths dictating a person’s quality of life?
SLPs assist the palliative care team by answering critical questions:
- Is the person having difficulty swallowing certain types of food, liquid, and pills? How severe is the issue? How high is the aspiration and choking risk?
- Will the eating and swallowing function likely get better? What is the patient’s therapeutic prognosis?
Within the conversation about goals prioritizing “patient safety” or comfort/quality of life, the SLP can assist:
Can we make adjustments in the care of the person to increase safety if that is still a goal (e.g., oral hygiene, oral moisturizers, positioning, diet modifications, hand-over-hand feeding, small-frequent meals with high caloric content, etc.)?
Can we make adjustments to increase comfort and meet the person’s preferences?
- Can the patient continue to be fed by mouth comfortably with efforts to minimize distress and optimize comfort and quality of life?
The SLP will collaborate with the whole medical team regarding: Is the poor nutritional intake due to a physiological difficulty swallowing or potentially other mealtime factors that could be addressed with compensatory techniques (i.e., cognitive decline, poor awareness of food in the mouth, distractibility, sensorimotor impairments)? At the same time the doctor will be looking into factors such as: reversible causes for cognitive decline, infection, depression and medication side effects. See also Jean Curran’s 1990 review of geriatric nutrition (Dysphagia, (5), 72-76) for the myriad of non-dysphagic reasons for reduced food intake (i.e., mealtime disruption with testing, taste/smell disturbances, gastric distention, depression, cancer, etc).
What can the Palliative Care SLP recommend (see also Pollens, 2004)?
Goals of care discussion, which can be greatly facilitated by consulting the Palliative Care Team at your facility. The doctor may need to place an order for a palliative care consult. If there is no such team, then suggest an Ethics Committee review of the case. Typically, any healthcare provider can request an ethics consult.
Avoid solely recommending NPO. This may steer the family to ask for a feeding tube placement, rather than thinking in terms of: “would my mom have wanted aggressive care or comfort care at the end of life?”
Re-evaluate as needed, especially if there is an acute-on-chronic exacerbation. When the acute issue resolves, the SLP can provide final recommendations in the form of options.
Provide options for the person and family to consider, from the most aggressive to most comfort-oriented?
Train techniques for safer (not necessarily the safest) and more comfortable eating and drinking (i.e., slight diet modifications or safer swallowing strategies).
Teach tips on feeding, positioning, amount, rate, and how to notice signs of fatigue and/or distress to discontinue a meal.
Work with the registered dietitian (RD) regarding adding high-calorie supplements (See Hanson, L.C., Ersek, M., Gilliam, R., & Carey, T.S. (2011). Oral feeding options for people with dementia: A systematic review. JAGS, 59, 463-472.)
Suggest keeping the mouth comfortable with good oral hygiene and an artificial saliva substitute/mouth moisturizer. Sometimes an individual at the end of life will be satiated by just a few sips of water or ice chips.
Help the family understand that what they are seeing is part of the natural course of advanced dementia and/or end-stage-illness. With very advanced dementia, for example, the individual may bite on a spoon because they do not recognize what to do with a utensil. They may hold food in the mouth, because they are not able to perform the conscious/cognitive act of initiating the mouth movements to form a ball of food and move it to the back of the mouth.
Share the research about how the placement of a feeding tube may do more harm than good in a person with advanced dementia (see below). I have seen this counseling help families feel less “guilty”. It is an understatement to say that this decision is extremely hard and emotional. Unfortunately, “food is love,” in many cultures.
But, fortunately the tide is turning, and the push for aggressive care at the end of a person’s life is slowly subsiding. More hospitals are adding palliative care teams. Recently at the hospital, I heard a doctor immediately and gently advise against a feeding tube, saying: “less is more in a situation like this.”
***PALLIATIVE CARE RESOURCE SECTION***
2021 webinar presented by Yvette McCoy, MS, CCC-SLP, BCS-S and Karen Sheffler, MS, CCC-SLP, BCS-S on MedbridgeEducation.com.
Tube-Feeding Research (listed from oldest to newest):
Croghan, J.E., Burke, E.M., Caplan, S., & Denman, S. (1994). Pilot study of 12-month outcomes of nursing home patients with aspiration on videoflouroscopy. Dysphagia, 9, 141-146. A retrospective review of 40 nursing home patients. Of the 22 patients who were aspirators, the tube-fed group (N=15) had higher rates of pneumonia and pneumonia death when compared to patients who did NOT receive feeding tubes.
Rabeneck L, et al. (1996). Long term outcomes of patients receiving percutaneous endoscopic gastrostomy tubes. JGIM, 11, 287-293. Followed 7,369 VA hospital patients receiving a PEG. Average age was 68 years old. 23.5% died during the same hospitalization as when they received the PEG. Half were dead in 7.5 months.
Feinberg, M.J., Knebl, J., & Tully, J. (1996). Prandial aspiration and pneumonia in an elderly population followed over 3 years. Dysphagia, 11, 104-109. They followed 152 SNF patients for 3 years in a prospective study, starting with Modified Barium SwallowStudy.com. Pneumonia was MOST frequent in the “major aspirators/artificial feeding,” versus in the “major aspirators who were in the “oral feeding” group.
Finucane T.E.F., Bynum J.P. (1996). Use of tube feeding to prevent aspiration pneumonia. Lancet, 348, 1421-24.
Finucane, T.E.F., Christmas, C., & Travis, K. (1999). Tube feeding in patients with advanced dementia: A review of the evidence. JAMA, 282 (14), 1365-1370. doi:10.1001/jama.282.14.1365. In a review of the literature from 1966-1999, they found tube feeding does not prevent aspiration pneumonia, prolong survival, reduce the risk of pressure sores or infections, improve function, or provide palliation. “The practice should be discouraged on clinical grounds.”
Langmore, S (1998). Predictors of aspiration pneumonia: How important is dysphagia. Dysphagia, 13 (2), 69-81. Hallmark study that showed tube feeding was a significant predictor variable in aspiration pneumonia. Her follow-up study on nursing home residents was: Langmore, S.E., Skarupski, K.A., Park, P.S., & Fries, B.E. (2002). Predictors of aspiration pneumonia in nursing home residents. Dysphagia, 17, 298-307.
Weissman, D. (February, 2003). Fast Facts and Concepts #85. Swallow studies, tube feeding and the death spiral. Dr Weissman coined the term “tube feeding death spiral.” He found in-hospital mortality rate after PEG placement of 15-25%, and 1 year mortality rate of 60%. www.capc.org/fast-facts/
Murphy, L.M. & Lipman, T.O. (2003). Percutaneous Endoscopic Gastrostomy does not prolong survival in patients with dementia. Archives of Internal Medicine (JAMA Internal Medicine), 163 (11), 1351-1353. https://archinte.jamanetwork.com/article.aspx?articleid=215667. In 41 patients with Dementia, the median survival rate in 23 patients who underwent a PEG placement was 59 days. The median survival for the 18 patients who refused a PEG was 60 days.
Ganzini, L. (2006). Artificial nutrition and hydration at the end of life: Ethics and evidence. Palliative & Supportive Care, 4, 135-143. doi:10.1017/S1478951506060196. https://journals.cambridge.org/action/displayFulltext?type=1&fid=454548&jid=PAX&volumeId=4&issueId=02&aid=454547&bodyId=&membershipNumber=&societyETOCSession=
Cervo F.A., Bryan L., Farber, S. (2006). To PEG or not to PEG. A review of evidence for placing feeding tubes in advanced dementia and the decision-making process. Geriatrics, 61, 30-35.
Mitchell S.L. (2007). Clinical Crossroads: A 93-year-old man with advanced dementia and eating problems. JAMA, 298, 2527-2536.
Hospice/Nursing Research Reminds Us:
“The belief that withholding hydration and nutrition at the end of life causes suffering is NOT supported by research regarding what happens physiologically when a body is deprived of food and fluids.” (Hanna & Joel, 2005, page 15).
- Loss of appetite occurs naturally in the shutting-down process
- Calorie deprivation results in decreased sensation
- End-stage dehydration causes anesthesia and decreased pulmonary congestion
- Complaints of thirst are relieved with sips of liquids in amounts far less than required for hydration.
- Hospice nurses have judged patients without alternative nutrition and hydration to appear in less pain than those with artificial means.
See this this link for a thorough summary of the hospice research and references:
More Palliative Care References:
Bogaardt, H., Veerbeek, L., Kelly, K. et al. (2015). Swallowing Problems at the End of the Palliative Phase: Incidence and Severity in 164 Unsedated Patients. Dysphagia, 30, 145–151. https://doi.org/10.1007/s00455-014-9590-1
Hanna, E., Joel, A. (2005). End-of-Life Decision Making, Quality of Life, Enteral Feeding and the Speech-Language Pathologist. Perspectives on Swallowing and Swallowing Disorders, 14(3), 13-18.
Langmore, S. E., Grillone, G., Elackattu, A., & Walsh, M. (2009). Disorders of swallowing: palliative care. Otolaryngologic clinics of North America, 42(1), 87–ix. https://doi.org/10.1016/j.otc.2008.09.005
Pollens R. (2004). Role of the speech-language pathologist in palliative hospice care. Journal of palliative medicine, 7(5), 694–702. https://doi.org/10.1089/jpm.2004.7.694
Palliative Care Links/Resources:
“Making Choices-Feeding Options for Patients with Dementia” by Hanson, L., et al (2011), University of North Carolina at Chapel Hill School of Medicine, Palliative Care Program. This was updated from “Making Choices: Long Term Feeding Tube Placement in Elderly Patients,” created in 2001 and updated in 2008 by Mitchell, S.L., Tetroe, J.M., & O’Connor, A.M. From the Ottawa Hospital Research Institute.
www.molst-ma.org. Medical Orders for Life-Sustaining Treatment (MOLST): The MOLST is a standardized form that translates a seriously ill patient’s preferences into valid medical orders that is honored across all care settings.
According to the Council on Ethical and Judicial Affairs (CEJA), Opinion 2.20, called “Withholding or Withdrawing Life-Sustaining Medical Treatment,” there is no ethical or legal warrant for the physician to evaluate differently a decision to withdraw tube-feeding from a decision to withhold tube-feeding.