Refusing treatment


The right to refuse treatment applies to all patients across all settings. Health care professionals are required by law and medical ethics to obtain informed consent of patients before initiating treatment. Securing consent from older adults is often difficult given the complex interplay of multiple comorbid conditions. Decision-making capacity for older adults may be diminished, fluctuating, or lapsed depending on patient condition, and even patients of sound mind may find it difficult to make decisions when presented with risks and benefits of treatment. Providers often rely on information from patients’ family members and caregivers to make decisions based on their best interests, but this is never ideal.1,2,3,4

Health care professionals can improve care for older adults by encouraging the use of advanced directives. Advance care planning is defined as a process of formal decision making that aims to help patients state their preferences for future care after they lose the capacity to make these decisions.1,3,4 Such documents stating patients’ wishes are seen as an extension of patient autonomy, affording them control over future treatment. They provide guidance for health care professionals and family members, in addition to protecting these individuals from civil and criminal liability.1,3 Still, these documents are rarely used, with only one third of Americans having completed an advanced directive.Even when patients have directives in place, health care professionals are often wary of the ethical and legal problems that can arise when carrying out these orders.3

It is important for patients to understand that advanced directives are “value neutral” and can be used to request as well as to refuse treatment. Many older adults would prefer comfort care and pain management at the end of life rather than invasive life-saving treatment such as mechanical ventilation and tube feeding. These documents can help evade such interventions.1 Benefits of advanced care planning include less aggressive medical care, better quality of life near death, decreased rates of hospital admission, and increased rates of hospice admission. Patients who have completed an advance care plan are significantly more likely to receive care that is aligned with their wishes than patients who do not.4

Interprofessional Assessment and Collaborative Interventions

All patients, regardless of gender, religion, socioeconomic status, diagnosis, or prognosis, who are able to participate in a conversation should be approached by the health care team to discuss and record treatment preferences. Ideally, advanced care planning forms part of routine care and is initiated as early as possible. Discussions between the patient, family, and health care team should evolve over time, rather than be initiated and finalized shortly after an acute event.1,3 Primary care providers, who are likely to have more comprehensive knowledge of a patient’s disease course and a sense of her preferences for care, are best positioned to lead these conversations. It is important that health care providers take the initiative in raising this topic with patients, as many see the responsibility of initiating these difficult conversations as belonging to the provider and may not raise the topic on their own.1,4

Before advanced care planning can take place, primary and acute care providers will need to assess whether the patient has the capacity to make decisions about her health care and to accept responsibility for the consequences of this decision. According to the Patient Self-Determination Act (PSDA), all individuals are presumed to have decision-making capacity until deemed otherwise.1,2 Although not designed for capacity determination, the Mini–Mental State Examination (MMSE) has been found to correlate with clinical judgments of incapacity and may be useful in identifying patients at the high and low extremes, especially for older adults with cognitive impairment.1,2 Psychiatrists and neuropsychologists with geriatric experience can assist in making these determinations about cognitive function. Another tool, the MacArthur Competence Assessment Tool for Treatment, is a structured interview that incorporates information specific to a given patient’s decision-making situation and can be especially useful in capacity determination.2 Providers should also consider the influence of language barriers and hearing or visual deficits when making a capacity determination, as patients may be fully competent but experience impairment under these conditions.1

If the evaluator believes that a patient is incompetent to make a treatment decision, efforts should be made by the health care team to identify causes of impairment and remedy them as soon as possible. Transient conditions such as fever, hypoxia, sedation, and uremia may all render patients unable to make their own treatment decisions.2 It is important to note that older adults who lack capacity to make high-risk treatment decisions can still have the capacity to designate a health care proxy or make certain lower-risk decisions.1 Once the health care proxy has been identified, the health care team should include patients, families, and proxies in discussions regarding the state of health and functionality that the patient is willing to accept.1 The group’s values and goals may change as the patient’s condition progress, which will necessitate confirming or amending the care plan.4 A patient’s decision not to complete an advanced directive must also be respected, and she should be reassured by the team that she will not be abandoned or receive substandard care without an advanced care plan.1

Nurses can play a major role in confirming patients’ knowledge about treatment options and the benefits, burdens, and consequences of each option. A common myth among patients is that having an advanced directive means “do not treat” or being kept alive against wishes. Nurses can help educate patients on the role of advanced directives and how they are created and put to use.Nurses at the bedside can assist patients in completing forms to establish a Durable Power of Attorney for Health Care (“health care proxy”) and a living will. Many states also recognize MOLST forms (“Medical Orders for Life-Sustaining Treatment”), which allows patients to endorse preferences for use of comfort measures, antibiotics, artificial nutrition and hydration, and CPR in the hospital. Five Wishes is another document for advanced care planning commonly used across settings.1

On a systems-wide level, organizations should ensure that every patient’s advance care planning documentation is filed and available at the time it is needed. The health care provider and health care proxy should both know about the directive and have copies on hand. The directive should be reviewed periodically by all parties to ensure that it is still consistent with patient’s wishes.1 Institutions also need to recognize language barriers and literacy needs in understanding and completing advanced directives, which will require use of professional medical interpreters and health care professionals who are willing to take time to explain paperwork in detail.1 As discussions evolve between providers and families, interprofessional team members including social workers, psychologists, hospital chaplains, and community clergy may be involved in conversations to assist patients and families in making decisions. The team can also make referrals to the institution’s ethics committee as needed to resolve conflicts between patients, families, proxies, and providers.1



Interprofessional contacts for this topic:
Primary care providers
Acute care providers
Geriatric psychiatrists
Registered nurses
Social workers
Professional medical interpreters
Hospital chaplains
Hospital ethics committees

Link to the following evidence-based protocols:
Advanced directives
Family caregiving
Healthcare decision making
Palliative care


1Mitty, E. L. (2012). Advanced directives. In M. Boltz, E. Capezuti, T. Fulmer, & D. Zwicker (Eds.), Evidence-based geriatric nursing protocols for best practice (4th ed., pp. 579-599). New York, NY: Springer Publishing Company.

2Appelbaum, P. S. (2007). Assessment of patients' competence to consent to treatment. New England Journal of Medicine, 357(18), 1834-1840.

3Aw, D., Hayhoe, B., Smajdor, A., Bowker, L. K., Conroy, S. P., & Myint, P. K. (2012). Advance care planning and the older patient. QJM, 105(3), 225-230.

4Mullick, A., Martin, J., & Sallnow, L. (2013). An introduction to advance care planning in practice. BMJ, 347-352.

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