The least restrictive option: The capacity to refuse dialysis
Thomas Jones BSc. MBBS, Y Aggarwal MRCP
Introduction: We present the case of a 35 year old adult male with end stage renal failure who was dependent on haemodialysis three times a week. He had a complex social situation. He had a history of heavy recreational drug and alcohol misuse. He had overcome his drug dependence after meeting his current partner with whom he was expecting their third child. His previous two children were healthy and aged 3 and 5. He had had a fractious relationship with his father and, his mother had left without further contact when he was an infant. He was an only child. He had started to get his life on track and was studying at college and working part-time to support his family.
Out of the blue: After missing a dialysis session, which was out of character, the patient had attended his regular dialysis session and informed the staff that he had taken a life-threatening large mixed overdose of over-the-counter simple analgesia with alcohol. Further, he wanted to die and refused to have dialysis or be admitted for drug antidotes and monitored care.
The patient admitted to feeling extremely stressed with balancing work and study commitments. He had missed rent payments and was facing being asked to leave his college course. His partner had also suffered a miscarriage at 7 months.
His dialysis consultant was present at the dialysis unit and convinced the patient to attend hospital for assessment and further treatment. His mood was noted to be tearful and fluctuant between feeling grief for his unborn dead child, the feeling of not providing well enough for his family, anger at being born with a lifelong renal condition and wanting to do better but also wanting to be dead as this was the only way out.
In Hospital: In hospital the patient was noted to be haemodynamically stable. He had a normal ECG and a mild acid-base disturbance. Biochemical parameters showed normal clotting and moderately deranged liver function tests. He had initially refused intravenous antidote treatment but was encouraged to change his mind by his partner and receive the treatment.
The patient continued to refuse dialysis treatment as he wanted to die and felt fed up with life. His mood remained fluctuant from feeling regretful of the situation he had caused/created to then feeling desperate and at the end of his tether due to his perceived overwhelming number of work and social problems. Throughout he maintained his love for his children and wanting to see them grown into adulthood.
The question of relevant capacity: His receiving renal team felt that the patient had fluctuating capacity due to his emotional state and based on the inconsistency of his intentions. Whilst wanting to die he also wanted to live to see his children grow. Further, he had independently self-presented to renal services despite not having told his partner of the overdose or being encouraged by other family or friends to seek medical advice. His character had also strikingly changed since the bereavement of his child and it was not reflective of his recent achievements.
Over the course of 24 hours, the patient continued to deteriorate from uraemia and hyperkalaemia, and he continued to refuse dialysis treatment. Psychiatric evaluation was obtained and concluded that the patient had taken a spontaneous overdose provoked by his recent bereavement which had induced a state of reactive depression. The psychiatry team agreed that the patient lacked relevant decision-making capacity due to his emotional state and inconsistency of statements regarding his future. A second opinion was sought from another consultant psychiatrist, the medical consultant on call, two renal physicians, his dialysis physician, senior nursing staff who knew the patient from previous admissions, and family. As the patient continued to refuse treatment in a combative fashion the Trust’s Legal and Ethics Teams were contacted, as the patient would need reasonable physical restraint in order to receive sedation to facilitate haemodialysis.
This conclusion of the specialist opinions were that the patient had capacity only for minor decisions but not to refuse dialysis. His previous planning of future events, seeking help for his overdose and general compliance with some medical decisions were deemed not to be consistent with a rational decision to die, and that he was unlikely to fully understand the impact of his decision. The patient was lawfully sedated and received dialysis treatment.
The right decision: At a later date, the patient regretted his decision to refuse treatment and felt the medical teams had made the correct decision to dialyse him against his wishes. He was given psychiatric and social support and took a leave of absence from the college for a few months. Both the patient and his wife had grief counselling.
This case raises several important discussion points revolving around the legal and ethical aspects of autonomy, capacity and consent.
- Respect for Autonomy is a fundamental basic ethical principle of medical practice. A patient must be allowed to make their own decision regarding care wherever possible. Other ethical principles, such as beneficence, justice and maleficence, are also fundamental but can be overruled by the principle to respect autonomy. For example, a patient with decision-making capacity may refuse to have care that is in their best interests and will improve their health.
- An assumption of being able to consent
The GMC’s Good medical practice states a physician “must be satisfied that you have consent or other valid authority before…[an]…examination or investigation…[occurs]…”. The principle of respect for autonomy is paramount in the assessment of decision-making capacity. The Mental Capacity Act (MCA) 2005 section1(2) requests that there is a presumption of capacity and a lack of capacity has to be demonstrated, thus there is also an assumption of being able to consent until proven otherwise. Without evidence to the contrary, a patients is assumed to have capacity regardless of “age, disability, appearance, behaviour, medical condition (including mental illness), their beliefs, their apparent inability to communicate, or the fact that they make a decision that you disagree with”.
- Impaired decision-making capacity
The MCA 2005 states that a person who lacks capacity in relation to a matter at the material time, is a person who is unable to make a decision for himself in relation to the matter because of an impairment, or disturbance in the functioning of, the mind or brain; which can be temporary or permanent.
The diagnostic criteria which need to satisfied before establishing whether a patient lacks relevant decision making capacity is commented on in section 3 of the MCA 2005. A person is unable to make a decision for himself if he is unable:
- to understand the information relevant to the decision
- to retain that information
- to use or weigh that information as part of the process of making the decision, or
- to communicate his decision
In practice this can be very difficult to judge and often a multi-disaplinary approach is required resulting in a conclusion of multiple assessments. With reference to this case, the agreement that the patient lacked decision-making capacity was the conclusion from a number of specialist medical, nursing, legal and ethical assessments.
- Threshold of decision-making
Capacity to consent is not a black and white phenomenon and is usually a threshold that needs to be met on a spectrum of various decision-making. A patient may have capacity to make small decisions but not larger, more complex ones, or that capacity may fluctuate and so patients may have capacity at one point in time but not another. Frequent reassessment of capacity, where possible, is often required.
- Assisting to meet the threshold of decision-making
Information and assistance should be given in order to maximise their capacity to make such decisions. The 2005 Mental Capacity Act(MCA) section 3 (1) states that, in order to have capacity to make a decision, a person must be able to understand and retain relevant information, must use it in making the decision and be able to communicate the decision. In our situation it was apparent that the patient understood he could die without dialysis was able to understand and retain the fact that he would die without dialysis, but was not using this information in making his decision considering the full implications of this, especially given his previous expressed opinions.
- Deciding in best interests
Where a patient lacks the capacity of consent, then medical decisions must be made in his or her best interests. Section 4 of the MCA 2005 states that a decision made in a patient’s best interests should take into account the persons past or present wishes, and the future life events he may have been planning shortly before his acute disturbance. A patient’s family and/or friends, where possible, should be consulted in order to better understand and determine the patient’s best interests based on their prior wishes.
In our situation the patient had had extensive contact with his renal physician and nursing team on the dialysis unit, and he had frequently talked positively about his personal and education related achievements.
- The Least restrictive option
Finally before any physical act is carried out in the best interests of the patient, regard must be given to whether the intervention that is requried can be effectively achieved in a way that is least restrictive of the patient’s rights and freedom of action. In our situation, the only way to safely administer haemodialysis to a combative patient was by sedating him.
1. Dialysis patients, as with many others with chronic disease, are at risk of depression and mental health problems and these must be treated proactively.
2. Capacity is not a binary state; it may be decision specific and may fluctuate over time and with person. It should therefore be reassessed frequently.
3. There should be a low threshold to involve the local legal and ethics committee to assist staff with such complex decisions.
1. Mental Capacity Act 2005
2. GMC Guidance