Swallowing Management in Palliative Care In a recent live chat, ASHA online dysphagia conference presenters Brenda Arend and Kate Krival talked about dysphagia in palliative care. Overheard
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Overheard  |   September 01, 2017
Swallowing Management in Palliative Care
Author Notes
  • Brenda Arend, MA, CCC-SLP, is a speech-language pathologist at Providence St. Peter Hospital in Olympia, Washington. Arend is an affiliate of ASHA Special Interest Groups 13, Swallowing and Swallowing Disorders (Dysphagia); and 15, Gerontology. brenda.arend@providence.org
    Brenda Arend, MA, CCC-SLP, is a speech-language pathologist at Providence St. Peter Hospital in Olympia, Washington. Arend is an affiliate of ASHA Special Interest Groups 13, Swallowing and Swallowing Disorders (Dysphagia); and 15, Gerontology. brenda.arend@providence.org×
  • Kate Krival, PhD, CCC-SLP, is an associate professor at Edinboro University of Pennsylvania. Krival is an affiliate of ASHA Special Interest Groups 3, Voice and Voice Disorders; 13, Swallowing and Swallowing Disorders (Dysphagia); and 15, Gerontology. ckrival@edinboro.edu
    Kate Krival, PhD, CCC-SLP, is an associate professor at Edinboro University of Pennsylvania. Krival is an affiliate of ASHA Special Interest Groups 3, Voice and Voice Disorders; 13, Swallowing and Swallowing Disorders (Dysphagia); and 15, Gerontology. ckrival@edinboro.edu×
Article Information
Swallowing, Dysphagia & Feeding Disorders / Overheard
Overheard   |   September 01, 2017
Swallowing Management in Palliative Care
The ASHA Leader, September 2017, Vol. 22, online only. doi:10.1044/leader.OV.22092017.np
The ASHA Leader, September 2017, Vol. 22, online only. doi:10.1044/leader.OV.22092017.np
Participant: To start, if a participant was to remember or put into practice only one idea from your session, what would that one key takeaway be?
Brenda Arend: The main thing I’d want you to take away is the shift in focus from “rehab” to “palliative” goals of care. It is there that we have the freedom to use what we know with our patients—but not feel we have to rehab them—and we can focus on quality of life and involve the team (family, patient, doctor, etc.).
Kate Krival: Mine would be that we manage our patients best by applying terrific evaluations and considering their wishes and the evidence ... That our palliative patients deserve the same attention to careful diagnosis and treatment possibilities as our rehab patients.
Participant: What is your thinking about milk-based products if patient has thick mucus but will only take milk-based products (and not no-fat but low- fat)?
Arend: It will depend on how the patient does with milk-based products, just like with anything else they want to eat or drink. If there are strategies to help, use them.
Krival: Does this milk issue appear to contribute to a problem? Or to assist in solving one? I’d have to really look at that on a case-by-case basis. I don’t mean to minimize the concern for a patient who has an increase in mucus with milk products, but I wouldn’t assume all would. Some do great even with the mucus issue. I’d consider a FEES [fiberoptic endoscopic evaluation of swallowing] to see.

Our palliative patients deserve the same attention to careful diagnosis and treatment possibilities as our rehab patients.

Participant: When the need arises to confer with a substitute decision-maker/POA [power of attorney] regarding wishes, and they state they don’t know or can’t make a decision, are there any questions or prompts that you find useful in trying to elicit information or guide the conversation?
Arend: Assuming you mean in discussions related to swallowing, as we don’t manage the overall conversation about goals of care. That duty belongs to the doctor. Sometimes I ask, “If the patient was speaking for themselves 20 years ago, what would they have to say about this decision?” Helping the POA get away from their own feelings about it, and really thinking about what the patient would want, makes it easier.
Krival: I often ask them what is troubling them about having to make the decision. What are the roadblocks from their point of view? And if that doesn’t lead to a pretty good conversation, I get the social worker in.
Participant: I was wondering if you had any practical interdisciplinary communication tips for the cases in which we as the SLP might be the ones recommending a transition toward palliation versus rehabilitation, particularly with the interdisciplinary team. I find I feel more comfortable and competent when proposing it to the family than I do with my co-workers.
Arend: It helps to have family watch my session with the patient. When the swallow isn’t going well, they can usually see for themselves, and then they ask what the options are if the patient can’t swallow.
Krival: And as far as the team, to some extent the same concept works pretty well for me, too. I will often ask the occupational therapist or physical therapist or social worker to join me in our session and in a discussion with the patient about what’s happening. Sometimes, if they see the patient is really miserable, painful swallowing, lots of coughing, finding the meal an unhappy experience, they’ll “get” the issue.
Arend: I explain bluntly to the doctor what I am seeing and what I expect in the future with regard to swallow safety. I’m fortunate to have very good relationships with most of the doctors, and will just straight-up tell them I think the patient has hit a crossroads of tube-feeding versus palliative swallow.
Krival: I think we as therapists are also pretty focused on how we would experience dysphagia, not on how our patients are. And in a different kind of example, I will sometimes point out that aspiration isn’t really bothering a given patient, and he’s so happy eating and drinking, and has fairly low risk parameters for pulmonary issues, so they’ll begin to see that perspective as well.
Participant: I was wondering two things: How do you suggest we introduce our “role” or skill set as SLPs to a hospital palliative care team? Also, when working in an acute care hospital with the now quick-turnover rate, how do you take that into account and help the NPO (nothing by mouth) patient with QOC (quality of care) and palliative plan of swallowing?
Arend: We met with our palliative care team to discuss our roles, as they were discharging SLP orders every time someone went into “comfort care.” That meeting helped a lot. And the second question, if a patient is truly NPO in acute care, my experience is they are really at end of life (or needing a tube feeding). If you are talking about patient who is truly at end of life, I provide education to staff and family about use of swabs and mouth moisturizer for oral comfort. As appropriate, I help with some ideas on limited PO intake, focusing on comfort.
Participant: In keeping within our scope of practice and providing education regarding tube-feeding with dementia patients nearing the end of life, could you please give an example of how you would document this in your chart note.
Krival: I will say that what helped me most in the SNF setting was to have collaborated with our DON [director of nursing] and medical director ahead of time on what evidence base we all agreed was pertinent, so that when any of us wrote something about the issue, we were in sync and consistent with the literature at the time.
Arend: First, I look to see if there is documentation about patient/family wishes about tube-feeding. Sometimes I just ask them myself and will let the doctor know. In my charting, I say, “Patient is unsafe for PO [oral] diet. If family decides on feeding tube, patient will still be at risk of aspiration of secretions and on tube feeding due to positioning. Patient may require restraints to leave tube in place.” And really, I talk to the doctor about it. I am surprised at how many doctors don’t know that tube feedings in the dementia folks do not offer much benefit, and they tend to welcome a conversation. I have given doctors the American Geriatrics Society position statement on feeding tubes in dementia for education. It’s not really something that I feel I can accomplish in a chart note. I have to have a conversation with the doc.
Participant: What one article best illustrates the benefits of careful hand feeding over tube feeding?
Arend: The American Geriatrics Society has references attached to their position statement on tube feedings in dementia. I would start there.
Krival: DiBartolo (2006) is a review article, which is always a fabulous place to start as a clinician, in my view. (Titled “Careful Hand Feeding: A Reasonable Alternative to PEG Tube Placement in Individuals With Dementia,” Journal of Gerontologic Nursing).

It helps to have family watch my session with the patient. When the swallow isn’t going well, they can usually see for themselves, and then they ask what the options are if the patient can’t swallow.

Participant: How do you deal with staff who refuse to feed the patient who is at risk of aspiration but is choosing to accept these risks for comfort and QO), especially in the context of a patient with few social supports where there is no one else to assist with feeding?
Krival: I don’t think there is one perfect response, because the staff issue is so broad. Ultimately, you have to get someone in the facility to appreciate the complexities of all of the variables: patient rights, facility responsibilities, and the medical concerns specific to this patient. So probably the starting place is before that particular issue arises with some good, collaborative, interdisciplinary education on palliative care, and some policies and procedures that are broader than just SLP roles or nursing roles.
Arend: In the acute hospital, I find good communication with the staff and explaining the goals are very important. Also, explaining the goals are about quality of life, not as much about safety, helps. I reinforce we are trying to provide a comfortable PO experience, so if the patient is comfortable while showing signs of aspiration, goals are met. If they are looking in distress, stop the meal and try again later.
Krival: And a really good evaluation or POC (plan of care) process that supports the concerns and comfort of staff as well as the patient. If you have the base policy and supportive point of view from the facility management, then you can provide the direct-care staff with training, support and appreciation for their efforts. It really helps.
Arend: We really do need doctor “buy in” on a plan like this where people are aspirating. Staff seems more comfortable when the doctor is saying, “feed them as we can.”
Participant: If an eval is ordered and the patient is unresponsive/actively dying, the lecture stated we should not evaluate. Would it be warranted to document an eval/note stating NPO due to inability to swallow secondary to unresponsiveness to oral stimuli, etc.?
Krival: Yes. I absolutely would document the condition of the patient, and that you brought the nurse in to verify and/or informed the nurse, and name the nurse. Plus put a plan in place, like, “Call us back if things change.”
Arend: I write these up as a “screening note” and say patient not appropriate for eval due to decreased LOA [loss of alertness], and please call us should the patient become more alert. After a couple of days of this, I discontinue the order if there is no improvement of the patient’s status.
Participant: Can you go into further detail on how you would interact with a patient/family that is on palliative care and through instrumentation is known to aspirate thin liquids but is requesting them and showing sign/symptoms (i.e., low oxygen, cough)? Aspiration is decreasing function but death is not imminent.
Krival: Interacting with family and patients is a huge area of discussion in our field, isn’t it? I think that the main points are to be very clear that they have choices, and to lay them out as accurately and as simply and as nonjudgmentally as I can.
Arend: I would probably show them the video or stills from the study, to start, along with education. Then if they still want to allow textures the patient will aspirate (and hopefully it is silent or just throat-clears so the patient isn’t uncomfortable in the process), I let the doctor know, document the informed decision the family is making, and continue with trying to work on any compensatory strategies that may help, such as small sips, intake when alert, etc. It’s hard not to judge in these situations when we are schooled in “stopping aspiration,” but autonomy is important, too.
Krival: I think that once you have evidence that the person’s oxygen saturation or comfort (cough) are problematic for them, then it is okay to ask if they’ve now changed their mind about the risk/benefit considerations that went into their initial decision. Initially, we may have been guessing: you aspirate, you may or may not be able to handle it comfortably and without bad heath consequences, so the choice is yours. But now we see a decline in health or comfort. Do you want to reconsider your initial choice?
Participant: I sometimes feel that I have more difficulty when educating other SLPs than MDs concerning QOL and safety of diet with cases concerning end-stage dementia and even patients with cervical osteophytes. Do you have any approaches or suggestions for educating SLPs on the topic of maintaining patient wishes within safety means versus simply downgrading all patients to thickened liquids in a single instance of aspiration on a VFSS (videofluoroscopic swallow study)?
Krival: I think the very best way is to help them learn to make choices, too. Some of us are so worried about being “correct” (a graduate school hangover?) that we are really challenged by the idea of laying out options for our patients. Have a monthly meeting where you go over cases, and maybe ask: Could we have made other choices here? Could we have offered more than one choice? Or even more than two? And help SLPs who are not used to this kind of divergent and safe, open way of thinking things through. Do it away from the immediate pressure of the patient in the room. I think this translates to care pretty quickly after a few reviews.
Arend: Perhaps something like a time to discuss the research, like a “research book club” and things you are learning at conferences like this would be the best way to proceed. On my SLP team, we share freely with each other the things we are learning and what we are excited about.
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September 2017
Volume 22, Issue 9