December 18, 2012 Features

'It's My Body...and I'll refuse treatment if I want to.'

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An 83-year-old woman suffers a stroke and is admitted to a skilled nursing facility (SNF) after five days in a hospital. While hospitalized, she is diagnosed with aphasia, dysarthria, and dysphagia. She also has hypertension and type 2 diabetes. Now, a speech-language pathologist in the SNF recommends a mechanical soft diet with nectar-thick liquids. The woman rejects this diet.

It's My Body...And I'll Refuse Treatment If I Want To

A 96-year-old man with advanced dementia lives in a SNF, where he's been for three years. After fighting off a urinary tract infection, he is struggling with worsening swallowing problems. The nursing staff asks an SLP to screen him, but his 70-year-old daughter—his legal health care decision-maker—objects because she fears the SLP will recommend a feeding tube.

After elective surgery for a knee replacement, a 62-year-old woman who speaks only Russian enters an SNF for a short course of rehabilitation. The SNF staff can't understand what she's saying about her discomfort, so a social worker asks an SLP to create a communication board for her. The woman refuses to use a board, insisting that the SNF provide an interpreter instead.

In each of these cases, the SLP might violate the wishes of the patient or the patient's designate by proceeding with typical evaluation or treatment. So what should the SLP do? Although it may be tempting to default to the usual course of action, each of these cases involves specific patient rights that the SLP and treatment team should use as decision-making guidelines.

To be sure, it may seem time-consuming to deliberate about patient rights and choices while juggling the pressures of evidence-based practice, efficient service delivery, reimbursement challenges, regulatory restrictions, and advocacy. But, as is increasingly the case across medical settings, it is essential to do so in SNFs, where laws dictate that patients' wishes be heeded. If they are not, there could be legal repercussions. The patient or family could bring a complaint to the state, or a Medicare or state audit could reveal a violation of regulations.

Let's take a look at the laws and trends that drive patient rights, what they indicate in each of these three situations, and what SLPs can do.

Resident Rights

The issue of patients' rights in nursing homes came to the fore as part of the nursing home reform movement in the 1980s. The movement's basic premise was to ensure that nursing home residents experience no decline in health or well-being that the person would not have otherwise experienced living in the community. Specifically, the federal 1987 Omnibus Budget Reconciliation Act (OBRA) identified a set of rights for SNF residents. states that these rights usually include:

  • Respect: You have the right to be treated with dignity and respect.
  • Services and Fees: You must be informed in writing about services and fees before you enter the nursing home.
  • Money: You have the right to manage your own money or to choose someone else you trust to do this for you.
  • Privacy: You have the right to privacy, and to keep and use your personal belongings and property as long as it doesn't interfere with the rights, health, or safety of others.
  • Medical Care: You have the right to be informed about your medical condition, medications, and to see you own doctor. You also have the right to refuse medications and treatments.

When a person requires care in the SNF, these rights are enforced by a state and federal survey process. Surveys are administered annually by the state's department of health or upon receipt of a complaint. Sometimes the Centers for Medicare and Medicaid Services (CMS) sends out surveyors as well. Surveys take samplings of patients and review their charts for concerns such as use of tube feeding or overmedication. This survey process has changed in the 25 years since OBRA was enacted, but the basic set of rights has remained the same.

A more recent emphasis on person-centered care has surfaced—both in the gerontology literature and in the regulatory initiatives undertaken by the federal government. The emphasis of person-centered care may vary by the health care setting. For example, acute care settings look at patients and loved ones as members of the care team who are actively involved in clinical decisions (Institute for Healthcare Improvement, 2011). In contrast, person-centered care in SNFs focuses on empowering staff to a create a home-like environment for residents, meaning one that's likely to facilitate rights and choices consistent with the values, culture, and dignity of the patient (Berwick, 2009; TMF & Quality Partners of Rhode Island, 2005).

SNF regulations and enforcement policies promote resident rights, but the industry's service-delivery culture may not always align with the concepts of patient-centered care. Growing advocacy efforts in the nursing home industry are evident in the work of groups such as the Pioneer Network, which promotes culture change in cooperation with CMS. Through their standards, the Pioneer Network seeks to focus SNF providers on patients' rights and health outcomes.

Especially pertinent to SLPs are the network's "New Dining Practice Standards," which are based on input from a variety of disciplines (see "New Dining Practice Standards for Nursing Homes," The ASHA Leader, Aug. 2, 2011). According to the American Medical Directors Association practice guidelines on altered nutritional status (2009), "Weight loss is common in the nursing home and associated with poor clinical outcomes such as the development of pressure ulcers, increased risk of infection, functional decline, cognitive decline, and increased risk of death. One of the frequent causes of weight loss in the long-term care setting is therapeutic diets. Therapeutic diets are often unpalatable and poorly tolerated by older persons and may lead to weight loss. The use of therapeutic diets, including low-salt, low-fat, and sugar-restricted diets, should be minimized in the LTC [long-term care] setting."

Of course, these standards may pose a challenge for implementation in the regulatory context of the SNF. Physicians may be pressured by families to do everything possible to prolong life. Conversely, families and patients may fear being subjected to interventions that they do not want, because these interventions may cause them to suffer unnecessarily, or because these interventions do not contribute to quality of life. Guidance from these standards would have caregivers follow the patient's choice before deferring to regulations.

Advance Directives

In 1990, the federal Patient Self-Determination Act was passed to give health care consumers the opportunity to express their wishes about medical treatment before treatment is administered. Consumers can state these wishes in a document or by appointing someone to speak on their behalf when they are unable or unwilling to do so. States also have laws specific to health care consumers and their self-determination rights.

Health care institutions are obligated under the law to deliver written information about a given patient's rights to make decisions about care, including the right to accept or refuse medical or surgical treatment and the right to make advance directives. Institutions are also obligated to provide written policies on implementation of these rights. The SNF is not allowed to refuse care to or discriminate against someone based on whether or not the person has stated an advance directive. For example, if the SLP makes a recommendation for a particular diet consistency and the patient chooses not to accept that recommendation, the SLP cannot refuse to treat the patient solely on the basis of disagreement with the recommendation. Or, the SNF cannot tell a patient and family that it will not care for the patient if tube feeding is refused—in essence, this would be "kicking out" the patient for asserting his or her choice.

Inherent in advance directives is the concept of informed consent. When the patient has decision-making capacity, the patient's agreement or refusal to undergo a specific medical treatment or procedure must be an informed choice. The essential elements for having this sort of decision-making capacity include:

  • Comprehension. The person must understand a particular treatment plan to determine its value. (If the patient lacks decision-making capacity, his or her formally designated proxy may make these decisions per the patient's wishes.)
  • Choice. The person should be able to consider more than one alternative.
  • Consequences. The person should appreciate the risks and benefits of a choice.
  • Coercion. The person must not fear reprisal as a result of making the decision.

Cases at Hand

Armed with this information, let's return to the three challenging cases facing the SLP in the SNF.

The 83-year-old who had the stroke has received extensive education about the recommended mechanical soft diet—and she clearly understands the risks and benefits of each option. To her, the benefits of refusing the recommendation outweigh the risks. And, based on the regulations, she is allowed to disagree with the SLP's recommendations, and even the physician's orders, without fearing that additional care or services will be withheld. Although the SNF staff may find this situation awkward, the patient may exercise ethically and legally her right to make this choice.

The daughter of the 96-year-old man with dementia fears that an SLP evaluation of him will result in a feeding tube—and her father already has a signed living will stating he wants no extraordinary measures at the end of his life. The SNF staff is legally required to honor his living will. The SLP in this case would be supported by ASHA's guidance document, Clinical Indicators for Instrumental Assessment of Dysphagia, which states that an instrumental assessment of swallowing should not be performed if the results would not change the course of treatment.

Is the 62-year-old Russian-speaker allowed to assert her preference for an interpreter to communicate her needs to her providers? Can she really refuse the communication board (which she considers childish)? Yes, her preferences must be honored. The SNF must provide an interpreter so that she can communicate her needs and understand the medical care decisions affecting her. She has the right to be treated with dignity and respect, which—for her—means no communication board.

When a patient asserts an opinion about care, it can add complexity that may be unwanted by the clinical professional. Descriptors like "difficult" or "noncompliant" find their way into documentation about these patients, yet when we use these descriptors we fail to acknowledge the patient's rights and choices. SLPs must incorporate patient choices in every plan of care to meet fully the tenets of evidence-based practice, which include the patient's and caregiver's perspectives, as well as clinical expertise and scientific evidence.

Mary L. Casper, MA, CCC-SLP, is a corporate rehabilitation consultant for HCR ManorCare. She is an affiliate of ASHA Special Interest Group 13, Swallowing and Swallowing Disorders, and coordinator of SIG 15, Gerontology. Contact her at

cite as: Casper, M. L. (2012, December 18). 'It's My Body...and I'll refuse treatment if I want to.' . The ASHA Leader.


American Medical Directors Association. (2009). Clinical practice guideline: Altered nutritional status. Columbia, MD: Author.

Berwick, D. M. (2009). What 'patient-centered' should mean: Confessions of an extremist. Health Affairs, 28(4), w555–w565.

Institute for Healthcare Improvement. (2011). Patient-centered dare on medical/surgical units.

TMF & Quality Partners of Rhode Island. Improving nursing home culture: Change package [PDF].


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