Dilemma: Patient with learning disability refuses care
Experts advise on a tricky scenario involving a middle-aged woman with severe learning disability who refuses any investigations for postmenopausal bleeding
A 55-year-old woman with severe learning disability and postmenopausal bleeding refuses any investigations. She does not have capacity, power of attorney or next of kin available. How should you proceed?
Dr Pipin Singh: Consider implications of onward referral
It is important not to assume lack of capacity, so hold a full discussion with the patient. If she is unable to provide any history, a detailed history of the bleeding is essential to ensure it is a true postmenopausal bleed and not haematuria, a rectal bleed or something more superficial. Confirmation may require a period of monitoring.
If it is confirmed, this usually warrants a referral under the two-week gynaecology pathway to exclude endometrial cancer. In this scenario, the referral is likely to cause more harm if the patient is distressed by the unfamiliar environment of the hospital. She is unlikely to tolerate a speculum, so invasive investigation will be difficult. She may also be unsuitable for surgical treatment and at significant risk from anaesthesia and any complications of surgery, depending on the degree of learning disability and any comorbidity.
As there is no next of kin, consider appointing or asking for an independent mental capacity advocate (IMCA)1, potentially through experienced nursing home staff or a social worker, to discuss the likelihood of cancer, treatment options, and potential benefit from interventions. Emphasise how distressing some investigations may be and that even a basic examination was not possible. The IMCA will weigh up the information and decide on behalf of the patient.
If it is agreed not to investigate further, a decision would be needed on a do-not-resuscitate form, along with a care plan for scenarios such as infection, dehydration or fractures, and persistent bleeding based on the assumption that she has endometrial cancer.
Dr Pipin Singh is a GP in Wallsend, Tyne and Wear
Dr Trevor Thompson: Explore her capacity further with carers
If the patient has severe learning disabilities, she will be living in an institutional or quasi-independent setting. A local authority or third-sector charity organisation must be involved in her care. She will probably be accompanied by a support worker from her home environment, where concerns have been raised about this bleeding.
Except in the most severe cases, decisional capacity is contextual. We shouldn’t assume this patient is unable to understand her condition and its implications. Establish capacity carefully with the help of her carers: it appears that at some level she has preference and does not want to co-operate with any investigation. Sometimes this process needs to be repeated over more than one visit.
It might be, for instance, that a vaginal examination plus smear could be conducted with minimal or no upset. It may reveal vaginitis and a simple topical treatment might put matters to rest.
If there is still concern about a treatable endometrial or cervical cancer, involve the local learning disabilities (LD) consultant. A ‘best interests’ meeting could be convened, which you should attend. In the absence of a next of kin and power of attorney, an IMCA might be appointed. An ultrasound would be a good next step and this could be facilitated by a hospital LD liaison nurse – possibly using a familiarisation visit.
I would advocate that the least restrictive options be tried before drastic options such as an enforced examination under anaesthesia. The GMC provides clear guidance.2
Dr Trevor Thompson is a GP in Bristol
Marika Davies - online
Medicolegal view: Follow the Mental Capacity Act closely
If your patient lacks capacity to make a decision about the investigation and there is no one to make a decision on her behalf – for example, a lasting power of attorney for health and welfare, or a court-appointed deputy – any decisions will need to be made in her best interests as set out by the Mental Capacity Act 2005 (MCA).3 It may be sensible to seek early input from a specialist such as a gynaecologist.
The MCA outlines factors in determining your patient’s best interests. Try to encourage her participation in the decision and find out her past and present wishes. Also consult others, such as those caring for her or taking an interest in her welfare. Do not make assumptions about her quality of life. Consider the least restrictive options.
If the investigations are considered to be in her best interests but she will not co-operate, it may be necessary to consider the use of restraint. The MCA says this should only be used if it is necessary to prevent harm to the person who lacks capacity, and it must be the minimum amount of force for the shortest time possible. In this case, temporary restraint to carry out the investigations may be justified but must be in proportion to the likely harm from failing to treat the possible condition.
If the investigations show treatment is required, any decisions made must be in the patient’s best interests. If she needs serious medical treatment – for example, chemotherapy or surgery, and there are no family or friends to consult, she will need an IMCA to represent and support her.
Dr Marika Davies is senior medicolegal adviser at Medical Protection
1 Office of the Public Guardian 2007. The independent mental capacity advocate service.
2 GMC Good Medical Practice. Chapter 3. Par 75-76.
3 Mental Capacity Act 2005.