When the Patient Says No

Case Report

Decision making at the end of life underscores a turbulent period in a patient and family's medical course, marked by volatile emotions and a need for clarity of the patient's goals of care. Often, it is complicated by the patient's severe illness, significant symptom burden, concurrent depression, and social issues, which may raise doubts regarding the patient's capacity for autonomy and self-determination.

We present a 48-year-old female with a 7-year history of a giant pan-invasive pituitary adenoma, with progression of symptoms despite multiple attempts at resection, a course of cranial radiation, and insertion of a ventriculoperitoneal shunt. The patient had persistent brain stem involvement and left cranial nerve palsy. Her social issues were complex, as she was estranged from family, her sister was petitioning for legal guardianship; she had recently been evicted from her home and was noncompliant with octreotide, antidepressants, and clinical follow-ups. Functionally, she had monocular vision, hearing loss, an unsteady gait, and impaired speech and swallowing. She depended on a gastrostomy tube for feeding and spent more than 50% of the time in bed. As an outpatient, her neurosurgeon had advised another course of radiation treatment and the initiation of chemotherapy in an attempt to control tumor growth, but she had refused. She had no advance directives but had named her sister as her health care power of attorney (HCPOA).

During her last hospitalization, she was intubated for acute shortness of breath and desaturation due to pooling of secretions. The patient self-extubated, subsequently failed a swallow evaluation, refused a tracheostomy for pulmonary toilet, and was consistently restless, agitated, and uncooperative, with episodes of delirium documented by low Mini-Mental State Examination (MMSE) ¹ scores per the psychiatry service. They also formally evaluated and treated her depression and were following daily. Neurosurgery again broached the possibility of radiation treatments to slow down symptom progression. The patient kept on refusing, stating that she just wanted to die and decided to “leave it all in God’s hands.” Her decisional capacity to refuse radiation, tracheostomy, and further treatment as well as her wish to die were questioned due to her delirium, depression, and profound social issues. The designated HCPOA deferred all judgments to the patient. Because she was refusing further intervention, palliative medicine was consulted as her goals had changed to best supportive care. On initial consultation, the palliative medicine service used the Bedside Confusion scale ² and clock drawing test ³ to evaluate her delirium. She failed both tests. As psychiatry was following daily, their service deemed that her delirium was improving overtime. Her depression was also being addressed and they did not think that this was contributing to her decision-making capacity. Palliative medicine recommended a bioethics consultation. Bioethics said it was ethically appropriate to allow an adult with decision-making capacity to refuse further treatment since she understands the consequences of her decision. Treatment in this situation was understood to be palliative. She also appreciated the fact that she was going to be discharged to an inpatient hospice facility.

Discussion

The case illustrates the concepts of decisional capacity, refusal of treatment, and autonomy at the end of life. It singles out the palliative medicine patient, with a chronic illness that is not immediately life threatening, yet who is suffering from such profound physical and existential distress, that quality of life is impaired and the prospect of continued existence is intolerable. It focuses on the refusal of life-sustaining treatment by patients with coexisting serious medical illness and depression.

When a patient refuses treatment, must it always be respected? What obligation do clinicians have to explore the underlying rationale, reasons, and values? Patient decision making can be guided by some norms of practical rationality. Its basic tenets include (1) an individual has relevant true, rather than false, beliefs that he or she understand his or her medical facts and treatment options, (2) he or she has a desired end and will use available means to reach this, and (3) he or she is able to deliberate and use his or her own imagination on his or her own actions and its potential consequences. ⁴

Should physicians always honor an individual’s refusal or request for treatment? While a competent patient may be able to refuse treatment even though he or she is aware of its benefit, a physician can decline to perform any procedure or provide care that it is deemed inappropriate.^5,6 Patient’s rights do have some limitations. ⁶

Determination of Capacity

A patient's capacity is rarely questioned unless there is refusal of lifesaving or life-prolonging treatment, there is evidence of depression or psychiatric illness, or when the patient chooses a treatment course other than that advocated by his or her physician.^7–9 Sullivan and Younger ¹⁰ highlights the differences in determining capacity between the psychiatric patients and the seriously medically ill patients. Although refusal of treatment in a psychiatric patient is deemed singular evidence for the need for treatment, refusal of treatment among the medically ill presumes appropriate decision-making capacity unless challenged by the physician. Controversially, in the principle of “double-standard,” competent patients are allowed to be unreasonable and make unreasonable choices, while patients labeled as incompetent have decisions which are challenged.

Delirium is a common problem in palliative care patients, with 42% delirious on admission, 45% developing delirium while in hospital, and 88% delirious in the actively dying phase. ¹¹ It is important to screen delirium to be able to evaluate capacity. Various tools are available for screening. The MMSE measures orientation, recall, and attention. Any score below 24/30 is indicative of delirium or dementia. ¹ The bedside confusion scale ² is a tool that was validated in palliative care population admitted to an acute inpatient palliative care unit. The clock drawing test correlates well with MMSE scores. ³ Other tools that can be used to screen delirium are Memorial Delirium Assessment scale (MDAS), which is a tool developed for patients with cancer, ¹² Other tools include MacArthur Competence Assessment Tool for Treatment (MacCAT-T), ¹³ and Confusion Assessment scale (CAM). ¹⁴ These are all validated tools to assess for capacity in the setting of dementia and delirium. Simple guidelines that would lead a clinician to prefer one tool over the other are the ease of completion and the patient population that is being evaluated.

Although the terms capacity and competency have been used interchangeably, they are not synonymous. ¹⁵ Competence is legal jargon, relating to the mental cognitive abilities to perform a legally recognized act rationally. ¹⁶ By default, people are considered competent, unless evidence proven otherwise. ^{7 –10} Thus, only a judicial court can determine incompetence and consequently assign a guardian to make surrogate decisions for the person. On the other hand, capacity would be the more medical term, as relating to the ability to make decisions in the direction of care, based on standards generally used by the court system. This determination can be done by the patient's primary physician, without the need to defer to a psychiatrist.

There are several concepts of determining decision-making capacity. Drane ¹⁷ introduced a continuum, the sliding scale concept, whereby the more serious the consequences posed by the patient's decision, the more rigid the standard to be used. The 3 progressive levels of stringency would be assent, understanding, and appreciation. Assent requires the patient to have only a general awareness of the situation when he agrees to or refuses treatment. Understanding requires the patient to weight the risk and benefits of the different options presented. The most stringent, appreciation, is used when acceptance or refusal of treatment could be life threatening.

Applebaum and Grisso ¹⁸ identified the single standard concept whereby a patient must be able to communicate a choice, understand relevant information, appreciate the situation and its consequences, and manipulate information rationally. These were simplified by Annas and Densenberger ¹⁹ into 5 questions, which echo the doctrine of informed consent: (1) What is your present condition? (2) What treatment is being recommended to you? (3) What might happen to you if you decide to accept the proposed treatment? (4) What might happen if you decide to forego the proposed treatment? (5) What alternatives are available and what are the consequences of each? A simpler method is the use of the reasonable person standard. ⁴ This validates consent and provision of medical information based on what a reasonable patient would want to know. It elicits the patient's views on sanctity versus dignity of life, individual versus family well-being, and redemptive value versus futility of suffering and contrasts it with what another rational person may hold in principle; usually this rational person would be the physician.

To summarize these theories on capacity, a patient must be able to understand the information being given to him, evaluate the consequences of the options presented, deliberate on these options based on his values, communicate this choice, and maintain consistency over time.

Additional resources to supplement determination of capacity would be the patient's living will, review of old records, and reliance on prior consents or refusals. There is more depth to this decision making when the decision is in concordance with the patient's previously expressed wishes or if the patient has been living with a long-standing condition, allowing him or her to place and rationalize his or her options based on his or her values and principles. Documentation of a patient's lack of decision-making capacity necessitates reliance on surrogate decision makers for substituted judgment.

Over the years, advance directives has served as an important tool to state the health care–related preferences of an individual and also has assigned a surrogate for decision making, should that individual ever become mentally unable to make medical decisions. It is not the single and simple tool to address a complex human problem of death and dying. ²⁰ It assumes that these preferences are stable over time. The following findings were seen in a study of 332 adults: (1) most preferences were stable over time, (2) decisions to refuse treatment were stable for the most and least serious illness, (3) age, gender, education, and completion of advance directives contributed to the stability of preferences, and (4) worsening physical and mental functioning make individuals less likely to choose life-prolonging interventions. ²¹

Capacity Versus General Cognition

Capacity is not synonymous to general cognition. Objective tests such as an MMSE or a clock drawing test, merely supplement capacity determination as it puts a patient's responses in perspective and helps the physician determine the level of discussion he should have with the patient.^9,22 These should never be used singularly or as surrogates in determining decisional capacity. When fluctuations in mental status occur, decisions made during the patient's lucid intervals should still be honored.

Depression and Treatment Refusal

The strongest rationale for allowing medically appropriate treatment to be withdrawn or withheld is the need to respect the autonomy of the competent patient. In patients with serious medical illness, depressive features may be only one of the factors which diminish their quality of life and may be reasonable responses to their situation. Legal competence to refuse life-sustaining treatment is thus presumed unless the physician seeks to prove otherwise. In stark contrast would be the psychiatric patient whose refusal of treatment or desire to die is seen as an outright sign of impaired capacity and by its very existence provides a justification for treatment. ¹⁰ It is a clinical challenge to diagnose depression in the seriously medically ill as the vegetative symptoms enumerated in the Diagnostic and Statistical Manual of Mental Disorder (Fourth Edition) (DSM-IV) criteria for depression may simply be the constitutional symptoms related to the patients underlying illness. A greater difficulty lies in end-of-life care when, often, patients present with magnified scenarios of terminal illness, profound grief, and depression. Thus, a patient's request to die, or to let nature take its course, can easily be misinterpreted as a request for suicide. Although it would be inaccurate to assume that severe depression would not have a significant impact on the capacity to decide on medical treatment, it is equally inappropriate to assume that mild or moderate depression would necessarily distort the patient's judgment about life-prolonging treatments. For individuals with mild-to-moderate major depression, treating their depression does not change their preferences for life-prolonging treatments. ²³ Screening tools like the Edmonton Assessment scale (ESAS) can be used to screen for depression. ²⁴ In cases of treatment refusal or withdrawal, it is reasonable to delay decision making when a patient has potentially reversible symptoms such as pain or depression and reversal of these symptoms may alter the patient's mind or when there is concern that this is a transient decision and treatment should be continued to allow the patient the chance to reconsider.^5,22

Patient Autonomy and Self-Determination

There is definite prevalence of legal opinion supporting the patient's right to refuse lifesaving or life-prolonging treatment. The decisions are straightforward when the goals of care of the patient, the family, and the treating physician are united and the trajectory of the illness is clear. However, palliative medicine physicians are now receiving consultations on patients with chronic illness who wish for nature to take its course, even when both the course and the patient's capacity are  ambiguous. Jenkins and Bruera ²² caution against the early introduction of a palliative medicine team in these settings because too-ready support of the patient's right to die may encourage a deliberate decision to die. Individuals should be allowed to change their preferences for life-prolonging interventions even when they are in a palliative care setting.

Conclusion

The patient we presented in this study, validating the exercise of self-determination, was able to rationalize the grave consequence of treatment refusal on her prognosis. Although her hospitalization was complicated by mental status fluctuations and coexisting depression, her choice to withhold treatment was a consistent and deliberate decision to let the illness run its natural course. She was transferred to an inpatient hospice and died a week later.

The need to determine decisional capacity is greatest when refusal of treatment can result in death. From another viewpoint, the need can also be considered greatest when a patient's autonomy is in jeopardy. From the palliative medicine perspective, the patient at the end of life, already burdened by both physical and existential suffering, would be dealt the harshest blow if he or she is denied his or her ultimate right for self-determination. Thus, the evaluation of a patient's decision-making capacity and recognition of refusals of life-prolonging treatment which must be honored become a crucial competency every palliative physician must acquire.