Patient Wishes Before Risk How do we honor patients' decisions about their swallowing treatment when they have dementia-and there's aspiration risk? Features
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Features  |   May 01, 2017
Patient Wishes Before Risk
Author Notes
  • Elizabeth Thompson Beckley is a freelance medical writer in Evergreen, Colorado. beckley_family@me.com
    Elizabeth Thompson Beckley is a freelance medical writer in Evergreen, Colorado. beckley_family@me.com×
Article Information
Swallowing, Dysphagia & Feeding Disorders / Special Populations / Older Adults & Aging / Features
Features   |   May 01, 2017
Patient Wishes Before Risk
The ASHA Leader, May 2017, Vol. 22, 40-47. doi:10.1044/leader.FTR1.22052017.40
The ASHA Leader, May 2017, Vol. 22, 40-47. doi:10.1044/leader.FTR1.22052017.40
Not unlike the instructions on a shampoo bottle (wash, rinse, repeat), the path to informed consent for patients involves a series of seemingly simple steps: Explain, ask, listen, repeat. And repeat and check back. Patients’ health status changes, and, accordingly, so do their reactions and desires.
This is the thinking behind offering patients meaningful, understandablefeeding choices when they have trouble chewing and swallowing—and respecting their autonomy.
Consider this scenario: A speech-language pathologist examines a person with dementia and finds that they aspirate on thin liquids, but if the liquid is thickened to a nectar consistency, they do not. The patient, however, refuses to drink the thickened liquids and becomes dehydrated. This raises the question: Is this really the most appropriate consistency for this person?
“We need to look at the whole picture,” says SLP Mary Casper, a corporate rehabilitation consultant for HCR ManorCare. “What are the person’s cultural values? What factors are going to influence their outcome? We can’t rely on diet modification as the only intervention.”
Government agencies have recommended such person-centered care practices as a shift from an older model of a more paternalistic, institution-centered practice. In 2013, the Centers for Medicare and Medicaid Services (CMS) released a memorandum on New Dining Practice Standards to increase focus on nursing home residents’ food choices. And in September 2016, CMS issued regulations for long-term care facilities supporting person-centered care and improved safety for residents.
Obviously, however, person-centered care becomes more complicated ifthe patient has dementia or other cognitive difficulties—and this is the case for just over 50 percent of long-term care residents, according to the U.S. Centers for Disease Control and Prevention. Are those patients capable of making an informed choice? Who is liable for adverse outcomes based on that choice?
Lawsuits related to swallowing treatment by SLPs are not very common, though apprehension about being sued may sometimes cause SLPs to balk at letting patients make their own decisions. The fear of being held liable for a negative outcome can override patient preferences—and the effort it takes to determine those preferences. Yet that very process is the care provider’s best protection. Relying on their strengths as expert communication facilitators and compassionate caregivers can put SLPs in the position to help their patients be at the center of their own care and enjoy a better quality of life.
The patient refusing a modified diet may not want to give up enjoyment of food or the social interactions surrounding it, notes Lynne Brady Wagner, director of the Stroke Rehabilitation Program and chair of the Ethics Advisory Committee at Spaulding Rehabilitation Hospital in Boston. Ultimately, she says, dysphagia treatment needs to involve shared decision-making among patient, clinicians and, in many cases, patients’ families. And making that shared decision-making happen requires a clear, deliberate process of open, ongoing communication and informed consent for treatment.

The patient refusing a modified diet may not want to give up enjoyment of food or the social interactions surrounding it.

Decisions by proxy
The terms “competence” and “capacity” (short for “decision-making capacity”) are sometimes used interchangeably, although they are not exactly the same. Competence is a legal term—our legal system supports the concept that all people are competent to make decisions unless a court determines otherwise. Decision-making capacity is a clinical term that is determined by a physician or sometimes a psychologist, and is based on a specific medical situation. (Capacity is discussed at length in a 2004 American Journal of Speech-Language Pathology article.)
When a patient is considered “competent,” the health care team looks to that person as the primary decision-maker, Brady Wagner says. The team walks them through the process of informed consent, making sure they understand all risks and benefits of treatment.
When a patient refuses the recommendation of the SLP and is at risk for aspiration or malnourishment, however, ethical conflicts may arise around two highly held values, says Brady Wagner, who also is an adjunct assistant clinical professor at the Massachusetts General Hospital Institute for Health Professions. One is the principle of autonomy—it is the patient’s body, and the patient has the right to decide what medical treatments to accept or deny. The other is the principle of beneficence—clinicians must make a recommendation that is clinically sound, evidence-based and made for the good of the patient.
Conflicts involving nutrition or hydration recommendations typically can involve tension between those principles, Brady Wagner notes. Depending on the circumstances, autonomy typically trumps beneficence, but when a person has communication and cognitive difficulties, it can be difficult to determine their wishes. In such situations, physicians may call on SLPs to facilitate communication during an evaluation of a patient’s decision-making capacity.
If the team determines that a decision is too complex for the patient, providers turn to somebody who can speak on behalf of the patient. Ideally, the patient will have named someone they trust as a health care surrogate or proxy through an advance directive. Involving the patient as much as possible, providers work with the patient’s proxy to determine the patient’s wishes. Proxy decision-makers seek to make the choice the patient would have made based on the patient’s expressed preferences and values. If those wishes are unknown, the surrogate must rely on their understanding of what would be in the patient’s best interest (determined by knowing the risks and benefits of treatment options and the patient’s personal values).

Autonomy always trumps beneficence, but when a person has communication and cognitive difficulties, it can be difficult to find out their wishes.

Capacity and planning
A consideration at the heart of the feeding choice issue is that decision-making capacity for patients with dementia is situational, says SLP Jennifer Brush, an expert in dementia care and owner of the Brush Development Company. Each patient has a unique set of abilities and limitations: For example, a person may no longer be able to decide about financial planning for their future. But that same person may be perfectly capable of deciding what to eat, what to wear or how to spend their time, she says. Clinicians need to evaluate a patient’s decision-making capacity for each situation.
Brush was instrumental in developing “A Process for Care Planning for Resident Choice,” a tool to help support feeding choice among residents of skilled nursing facilities. Published by the Rothschild Person-Centered Care Planning Task Force in 2015, the guide recommends planning policies and procedures that put residents’ rights to self-determination on par with the responsibility for resident safety.
The guide lays out informed consent and decision-making steps, as well as recommendations to communicate the patient’s choice through the care plan. The process is a departure from the medical model, in which health care professionals make decisions on behalf of patients, Brush notes. It’s more time-consuming, she says, but it’s well worth making that time on behalf of patients’ desires.
“[Deciding for the person] is a habit people are in, but no matter what we think, it is not our opinion that is important,” Brush says. “When we’re working with someone who can’t communicate choice well, we need to look at nonverbal communication, spend time with the family, and speak with the people closest to that person. We don’t just make a choice for them. We do the best we can with the person in front of us.”
Supporting patient choice involves due diligence, agrees Joseph Murray, chief of the Audiology Speech Pathology Service at the VA Ann Arbor Healthcare System. Providers need to honor every preference recorded when the patient was cognitively intact, coordinated with information from proxies, he says.
Murray also urges clinicians to heed socioeconomic, racial, ethnic and cultural differences among patients that may influence decisions. For example, some patients and their families may believe an intervention is curative when it actually isn’t. These viewpoints may be due to a lack of knowledge or exposure, or to clinicians’ failure to explain treatment in a culturally appropriate way. Some in lower socioeconomic groups haven’t had access to health care and believe that more care is better care, Murray says.
“People often expect there can be some fix, but that’s just not the case in a lot of disease processes,” he notes. “Sometimes our job is to shepherd people through a period of progressively less ability, and that is a different communication process from what may occur in a rehabilitative environment.”

The fear of being held liable for a negative outcome can override patient preferences—and the effort it takes to determine those preferences. Yet that very process is the care provider’s best protection.

Clinician responsibility
When faced with a dysphagia treatment situation they’re unsure of, providers have a responsibility to educate themselves, says swallowing disorder specialist James L. Coyle, associate professor at the University of Pittsburgh in the departments of Communication Science and Disorders and Otolaryngology.
“We have to be responsible for finding resources when we need them—whether contacting our facility’s librarian, using the search engines on PubMed, or going to a reliable resource,” he says. “Formulate a question, then go out and find the answer from credible resources.” (Resources include ASHA’s adult dysphagia page on the Practice Portal and dysphagia evidence map.
Once the clinician clearly understands and characterizes the patient’s dysphagia, and identifies treatment options, Coyle suggests the clinician follow a series of steps toward informed consent:
  • Clearly match the actual risks to the patient’s disease process. It’s important to differentiate actual risk from perceived risk, says Coyle. “There is always a ‘risk of aspiration.’ It cannot be lowered to zero risk. A clinician who is afraid of someone aspirating will often do anything they can think of to prevent aspiration, even if the risk is acceptable (a topic for another time),” Coyle says. “The clinician has to integrate real risk into the care management plan and recommendations. Expecting to lower risk to zero often leads to unnecessarily restrictive interventions. The treatment has to match the risk.”

  • Describe the patient’s dysphagia and its implications to them and/or their surrogate in real terms, then verify understanding. To ensure understanding, ask the patient or surrogate to summarize what they’ve learned and to define their goals. If there’s a gap in understanding or expectations, identify them and review the information again with an adapted communication style. Use different terms, as needed, until all truly understand and feel comfortable with their decisions.

  • Patient autonomy ultimately guides treatment selection—the patient must agree with, accept and participate in the treatment. It’s not a question of “refuse or accept,” and it’s not about “compliance,” Coyle points out. “The patient is the one who has to pull the trigger and accept our recommendations or different ones,” Coyle says. “By the time you get to, ‘Which treatment we reviewed best addresses your goals?’ the patient has had all his questions answered, understands the treatment and its components, and agrees to be our teammate in treatment. It takes a while, ensuring understanding, but that is informed consent. You’re saying, ‘I’ll do this, if you do that.’ It is a deal, a contract.”

  • Keep detailed records of conversations with patients and proxies. “Everything that is said should be clearly documented,” says Coyle, and included in the medical chart. “We should all take notes—memories fade.” Also, always keep communication lines open, as a patient’s decision may change once they have experience with the treatment, Coyle advises. Before he leaves the treatment room, Coyle says he always finishes with, “Do you have any questions for me? Is there anything you’re not 100-percent clear on? Do you want to think, and we’ll follow up tomorrow?”

Weigh the risks
Still, while the health care culture—and even regulations—are bringing informed consent to the fore, some SLPs continue to say, “I have to protect my license,” notes Casper of HCR ManorCare.
“My response is, no, you have to present your professional opinion based on your skill, education and experience, and do so in ways patients can understand and articulate their choice based on having all the information,” Casper says.
Casper offers a scenario in which an SLP maintains that a patient should have nothing by mouth, and the physician recommends a feeding tube. Casper notes that the leading cause of death among tube-fed patients is aspiration pneumonia. “We think we’re making a person safer, but will they aspirate bacteria?” she asks.
Another risk from feeding tubes is the increase in reflux caused by less swallowing by mouth and changes in the tone of the esophagus. Yet another risk is muscle disuse atrophy due to lost muscle memory and strength from not swallowing, she says.
“I’m not going to tell you ever that there is any one choice that is without risk,” Casper says. “Every choice has both risks and benefits associated with it. It is really up to you [the patient] to understand that there might be something that is more important to you.”

It is inappropriate to give someone a piece of paper saying if something bad happens, it’s not my fault because I don’t know what I’m doing or I’m in over my head.

Waive the waiver
One way that clinicians sometimes seek to shield themselves from risk is having a patient or their proxy sign a waiver to “protect” the clinicians from legal action. In the view of Eric Carlson, directing attorney with the nonprofit Justice in Aging, these waivers are not, in fact, protective and can actually interfere with the provider-patient relationship.
Case law suggests these documents—sometimes called “negotiated risk agreements”—are unenforceable, improper and invalid, says Carlson, whose organization has assisted in developing guidance on involving seniors in planning their own care. (Carlson served on the Rothschild Person-Centered Care Planning Task Force.)
“It is inappropriate to give someone a piece of paper saying, ‘if something bad happens, it’s not my fault because I don’t know what I’m doing or I’m in over my head,’” Carlson says. “That doesn’t mean that a provider is strictly liable for any kinds of bad outcomes; it means the provider’s liability should be based on whether he or she has acted negligently.”
Echoing Coyle, Carlson does recommend that providers document that a choice has been given to the patient, that the patient has received adequate information, and when presented with that information, the patient has made a choice. If there are negative outcomes, the provider can point out that the patient made this choice.
To the same end, when the patient has selected a course of action other than the one recommended by the SLP, the “Ethical Concerns” section of ASHA’s Adult Dysphagia Practice Portal advises SLPs to educate the involved parties about possible health consequences and to document all communication with the patient and caregivers. The guidance also notes that many facilities have an ethics consultation service to help clinicians, patients and families address challenges when ethical issues arise.
“Just because someone has dementia does not mean we make decisions for them,” Carlson says. “Does legal liability change? No, not if decisions are made and documented properly. That’s why the whole idea of care process planning came about.”
Carlson says he is optimistic about the attention that person-centered care—and its focus on listening to patients and respecting their preferences—is receiving in the long-term care services field. “All of us, if our opinions were disregarded on a routine basis, would start to feel a little disillusioned,” he says. “Providers need to do what they can to personalize or individualize service.”
Indeed, excessive worry about safety can create a situation of excess disability for patients, says Brush of the Brush Development Company. “There is fear of negative outcomes, but people forget about the negative outcome of not being allowed to make a choice.”
A Tool to Help Determine Preferences of Dementia Patients

Even some people with very advanced dementia can understand what others ask of them and can answer meaningfully, according to research by Michelle Bourgeois, a professor in the Department of Communication Sciences and Disorders at the University of South Florida.

To help these patients and their clinicians understand one another, Bourgeois has researched and invented the graphic visual cuing system VoiceMyChoice™ (VMC). The tool aids communication by adding a written stimulus to a visual cue. It can help pinpoint quality-of-life issues by facilitating conversations with patients about pain in their body; what activities they do and do not like to do; and what, how and when they would like to eat—or not.

A recent study of the VMC system found that use of the tool could significantly improve nurse assistants’ understanding of preferences of long-term care residents with dementia.

“To be useful,” Bourgeois and her co-authors write, VMC “must be incorporated into job routines and supported by supervisory staff and administrators, and the preferences of residents must be both included in plans of care and honored.”

Online Conference Explores Dysphagia

Dysphagia in Older Adults,” an online conference available May 3–15, explores a number of dysphagia-related topics through recorded lectures available on demand, discussion threads related to each lecture, and live text-based chats with presenters.

Session topics include essential knowledge and skills for managing dysphagia; oral hygiene; optimizing eating and swallowing for people with dementia; physiologic changes and how they interact with disease; dysphagia assessment and management in palliative care; diet selection and risks; exercise-based interventions; informed consent; nutrition and dysphagia; delirium; and presbyphagia.

Participants can earn up to 24 instructional hours, depending on the number of sessions they complete and chats they attend.

Sources
Bourgeois, M. S., Camp, C. J., Antenucci, V., & Fox, K. (2016). VoiceMyChoice: Facilitating understanding of preferences of residents with dementia. Advances in Aging Research, 5, 131–141. doi: 10.4236/aar.2016.56013 [Article]
Bourgeois, M. S., Camp, C. J., Antenucci, V., & Fox, K. (2016). VoiceMyChoice: Facilitating understanding of preferences of residents with dementia. Advances in Aging Research, 5, 131–141. doi: 10.4236/aar.2016.56013 [Article] ×
Calkins, M., Schoeneman, K., Brush, J., & Mayer, R. (2015). A Process for care planning for resident choice. Rothschild Person-Centered Care Planning Task Force. The Hulda B. & Maurice L. Rothschild Foundation: Chicago, IL.
Calkins, M., Schoeneman, K., Brush, J., & Mayer, R. (2015). A Process for care planning for resident choice. Rothschild Person-Centered Care Planning Task Force. The Hulda B. & Maurice L. Rothschild Foundation: Chicago, IL.×
Calkins, M., Brush, J. (2016). Honoring individual choice in long-term residential communities when it involves risk: A person-centered approach. Journal of Gerontological Nursing, 42(8), 12–17. doi: 10.3928/00989134-20160531-01 [Article] [PubMed]
Calkins, M., Brush, J. (2016). Honoring individual choice in long-term residential communities when it involves risk: A person-centered approach. Journal of Gerontological Nursing, 42(8), 12–17. doi: 10.3928/00989134-20160531-01 [Article] [PubMed]×
Casper, M. L. (2012). It’s my body…and I’ll refuse treatment if I want to. The ASHA Leader, 17(15), 12–14. Doi: 10.1044/leader.FTR1.17152012.12
Casper, M. L. (2012). It’s my body…and I’ll refuse treatment if I want to. The ASHA Leader, 17(15), 12–14. Doi: 10.1044/leader.FTR1.17152012.12×
Horner, J., Modayil, M., Roche Chapman, L., & Dinh, A. (2016). Consent, refusal, and waivers in patient-centered dysphagia care: Using law, ethics, and evidence to guide clinical practice. American Journal of Speech-Language Pathology, 25, 453–469. doi: 10.1044/2016_AJSLP-15-0041 [Article] [PubMed]
Horner, J., Modayil, M., Roche Chapman, L., & Dinh, A. (2016). Consent, refusal, and waivers in patient-centered dysphagia care: Using law, ethics, and evidence to guide clinical practice. American Journal of Speech-Language Pathology, 25, 453–469. doi: 10.1044/2016_AJSLP-15-0041 [Article] [PubMed]×
Leo, R. J. (1999). Competency and the capacity to make treatment decisions: A primer for primary care physicians. Primary Care Companion to the Journal of Clinical Psychiatry, 1(5), 131–141. [Article] [PubMed]
Leo, R. J. (1999). Competency and the capacity to make treatment decisions: A primer for primary care physicians. Primary Care Companion to the Journal of Clinical Psychiatry, 1(5), 131–141. [Article] [PubMed]×
Resources for honoring informed choice:
CMS Final Rule: Reform of Requirements for Long-Term Care Facilities, published in the Federal Register, Vol. 8, No. 192, October 4, 2016.
CMS Final Rule: Reform of Requirements for Long-Term Care Facilities, published in the Federal Register, Vol. 8, No. 192, October 4, 2016.×
New Dining Practice Standards, 2011. The Pioneer Network and The Hulda B. & Maurice L. Rothschild Foundation
New Dining Practice Standards, 2011. The Pioneer Network and The Hulda B. & Maurice L. Rothschild Foundation×
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FROM THIS ISSUE
May 2017
Volume 22, Issue 5