Abstract
Introduction
This is the fourth of a new series of cases provided and discussed by UK clinical ethics committees. This series developed from the Virtual Ethics Committee, which discussed a case in each issue of the first two volumes of the journal. We invited all of the clinical ethics committees registered with the Clinical Ethics Network to volunteer to both submit a case and then discuss a case allocated according to the experience of the committee from the resulting pool (i.e. committees will not be discussing their own cases). The committees were given some guidance on how to generate a case, including the advice that unless consent from all parties to a case could be obtained, we would prefer fictional cases based on the combined experience of the committee, or on an issue that they thought needed to be more widely discussed. The editorial committee took this decision in order to safeguard patient confidentiality. To the same end, we decided that the committee referring a case would not be identified (as this would provide a geographical indicator of identity), but we would name the committee discussing the case. A member of the editorial committee attends the discussion of the case and writes the summary to be published in Clinical Ethics, once the discussing committee and the journal editors has approved it. All committees and all of our readers individually are invited to respond to the summary of the discussion once printed. Following the journal's usual review process, we welcome short articles or letters expanding upon points raised by the discussing committee or sharing similar experiences. We are also interested in publishing examples of good practice or guidelines on difficult areas that have been generated by clinical ethics committees during the course of their work.
We have had an overwhelming response for our invitation to participate in this new series from clinical ethics committees from all over the UK, and look forward to some lively case discussion. Committees which would like to participate but which have not already submitted a case should contact Ainsley Newson (
Rapid referral from the general physicians
Clinical details
Mrs D, a 75-year-old retired librarian, was fully independent until four weeks ago. She lives alone and cares for herself, going out to the local shops on a daily basis. Over the last four weeks she has become increasingly tired and lethargic. She has not been eating well and has lost weight, though she is not sure how much. She saw her general practitioner (GP) who could find no specific cause for her tiredness but he sent off some urgent blood tests. The following day she saw her GP again, the tests revealed severe kidney failure and she was sent straight to A&E.
On arrival in A&E she was seen and assessed by our general medical team. She was tired and listless. There were no significant positive findings on clinical examination. Repeat blood tests confirmed severe acute kidney failure with functions less than 10% of normal. Her potassium level was high though not immediately life-threatening. Our team judged that immediate treatment with dialysis was not needed, but that it would become necessary within 24–72 hours.
An emergency renal tract ultrasound has shown that the drainage system of both kidneys is expanded (hydronephrosis) suggesting that the urine drainage system is blocked. A mass in the pelvis is also seen which could account for the blockage. This has been confirmed by computerized tomography (CT) scan, and the radiologists feel that from its irregular appearance it is almost certainly a malignant tumour. Identifying the precise origin of the mass from the CT scan is difficult – it is possibly ovarian or uterine.
Therapeutic options
The options available to the patient and the team include the following:
Nephrostomies: We could ask the urologists to place drainage tubes (nephrostomies) in the kidneys to temporarily relieve the obstruction. Given the previously normal renal function (albeit four years ago) and the fairly rapid history of decline, there is reasonable hope that allowing urine to drain freely will restore at least some kidney function. This could either allow further assessment and intervention or simply provide more time for decision-making. Nephrostomy insertion involves insertion of tubes through the skin and carries significant risks of bleeding and infection. Given her precarious renal function, the urology team may want the patient to be dialysed first.
Haemodialysis: Insertion of a tube into a neck or groin vein would permit haemodialysis. Haemodialysis replaces the function of the kidneys. This too would allow time for assessment, intervention and/or decision-making. Vascular access for dialysis is uncomfortable and invasive, although the patient has already had a small catheter (not adequate for dialysis) placed in a neck vein. The implications of dialysis treatment in the medium to long term are risks of bleeding and infection, three 4-hour sessions of dialysis a week in the hospital, the travel and the complications of dialysis itself.
Biopsy of mass: Stabilization of renal function would be necessary first. A biopsy is invasive and although it may be possible radiologically, it may require surgery. The radiologist thinks the mass is almost certainly malignant with a very low probability of any curative treatment. At best, palliative radiotherapy might be an option.
Conservative management: With the presence of an (presumed) incurable malignancy, invasive procedures such as haemodialysis and nephrostomies may not be warranted. Untreated renal failure will lead to death within a few days. So far, Mrs D's symptoms are few and she has no pain. The onset of symptoms with the pelvic mass is unpredictable but likely.
Mrs D's wishes and her relatives' views
The patient's closest relatives are her sister and nephew: both have attended with her. She has no other close relatives. They have confirmed that she is normally alert and oriented and agreed that this was still the case.
Our discussions with the patient have proved difficult. She is tired and easily distracted, though not overtly confused. She is reluctant to be drawn into discussions about her management, stating that she would prefer the doctors take decisions for her. She has said: ‘I'll do whatever you think necessary, doctor,’ while at the same time saying that she is reluctant to have any procedures, although she has already allowed the insertion of an internal jugular line. The stress of her condition, the biochemical changes (uraemia) and the sudden change of context are all undoubtedly affecting her mood and outlook. Nevertheless, we have no grounds to suspect that she is not competent to make decisions about her treatment but she appears disinclined to do so.
Both the family members feel that she should not have ‘unnecessary invasive procedures’. They think that, assuming a reasonably high level of confidence that this is an untreatable pelvic malignancy, dialysis is not appropriate. They are less decided about nephrostomies. In general, they feel that interventions to simply prolong life in the absence of possible cure and with the possibility of worsening symptoms from the malignancy (such as pain) are not warranted. Both have stated these views clearly and independently and give the impression that this represents what the patient would want. We explained that the risk of worsening symptoms would have to be weighed against the possible benefits of the patient having several months to come to terms with her diagnosis and prepare to die. The alternative, not intervening, would mean that death was inevitable within a few days.
Our reason for referral to Clinical Ethics Committee
The team has approached the Clinical Ethics Committee to discuss the case, with the following questions in mind:
The patient is competent but choosing not to enter into decision-making: Does the decision then become as if the patient were incompetent? If so, what weight should we give to the relatives' opinions? How can we weigh the benefits of a pain-free death within days against the benefits of a few months extra survival but with likely additional symptoms and treatments? Is it acceptable for this decision to be made in the absence of diagnostic certainty?
Response from CVCEC
Thank you for your referral, which we considered in our meeting on 8 July 2008. We thought that this was a very interesting and challenging case and we discussed it at length. You asked three questions and we have tried to structure our advice around our responses to these questions.
Question 1: The patient is competent but choosing not to enter into decision-making: Does the decision then become as if the patient were incompetent? If so, what weight should be given to the relatives' opinions?
We accept that under the Mental Capacity Act 2005, there should be an assumption that the patient is competent until proven otherwise and we accept that we have not spoken to Mrs D or had an opportunity to assess her so have to rely on your judgement and impressions. At the same time, given her clinical condition, we wondered whether she had only fluctuating capacity or capacity to make only some kinds of decisions. Accordingly, we wondered whether more should be done to enhance her capacity – for instance, even a couple of sessions on dialysis would enable her to be more alert, and as a result she may be more willing to engage in decision-making about her care and the future management of her condition. The Mental Capacity Act certainly puts the onus on carers to do everything possible to enable patients to make decisions for themselves. We completely accept that patients are, and should be, free to decide to let those managing their care make decisions for them. Indeed, it would be arguably paternalistic to force such patients to make decisions for themselves if their autonomous wish is for these decisions to be made by others, whom they trust to act in their best interests.
In this case, however, we were uncertain, on strength of the information provided, whether Mrs D was as able as she could be to make the decision to let her doctors decide for her. We wondered whether there would be some merit to providing minimal treatment aimed at enhancing her capacity and enabling the team to become much clearer about what, precisely, her wishes are. For instance, although it could very well be the case that she simply trusts her doctors to decide for her (which is not unexpected in a woman of her age), it might also be that she is scared, or perceives herself (wrongly) to be a burden, or is overwhelmed by her (potentially terminal) differential diagnosis and the speed at which she has deteriorated from being very independent to quite poorly, and possibly, imminently dying. Also, minimal treatment to enhance her capacity might take some of the urgency out of the situation and permit other mechanisms to be put in place that would provide more information to the team about her wishes. For instance, she could be offered the services of an advocate (in our experience Independent Mental Capacity Advocates [IMCAs] are very reluctant to become involved at all where relatives are available, so this is probably not a realistic possibility in Mrs D's case, but an independent advocate may be) and a clinical psychologist. She might find it easier to confide in an independent advocate than her sister and nephew, and a clinical psychologist may be able to provide the team with more information about her reasons for apparently not engaging with them. This further information may be of use in addressing your other two questions. It would also enable you to be confident that she has understood and ‘taken on board’ all of the information about the seriousness of her condition and consequences of the various options you outlined.
On the other hand, it may be thought that to provide even such minimal treatment is to make a commitment to continue to treat her, even if she is adamant that you must decide for her, and this might not be something that you feel comfortable with. Indeed, she may not feel able to tell you to stop treating her, even if she finds the treatment undesirable, as patients sometimes feel that they are letting staff down if they subsequently refuse treatment. Moreover, we recognize that even minor interventions to improve Mrs D's capacity in the short term might have a longer-term impact on her quality of life and, as such, will necessitate a balancing of benefits and harms. For these reasons, it is important that the purpose of this minimal intervention is made clear to the patient, relatives and the team, so that everyone is aware that all that is being offered is the opportunity to become clearer about what her views actually are.
We also discussed whether, under the circumstances you described, Mrs D has effectively given her implied consent to whatever course of action you think best because she has consented to leave the decision-making to you (one member thought her consent could even be described as explicit consent, but others disagreed with this analysis). This led us to discuss how best to summarize the ethical tensions the case presented. We were uncertain whether you regarded this case as one of justified, albeit weak, paternalism 1 (because Mrs D was on the border for capacity and you were acting in her interests) or a classic case of beneficence versus non-maleficence (because however you acted some good and some harms may result and a tension results from attempting to balance the two). We were ourselves uncertain of how to categorize this case. On balance, though, we were not convinced that, given her condition and on the strength of the information provided, you could be certain about her capacity and enhancing her decision-making powers would help to give you more certainty and perhaps provide a solution to your questions.
Turning to the role of the relatives, clearly they are in a position to help you to understand what Mrs D's preferences are likely to be, though in our experience it is rare for patients to have had such explicit discussion with relatives, especially when their condition has such an acute onset. It may, however, be that she has talked to them about other people with (perhaps different) terminal conditions and expressed some opinions about what she would have wanted for herself in their condition that could be applied to her current circumstances. Her relatives certainly appear to be, independently, agreeing that conservative management is consistent with her character. If you do decide to undertake minimal interventions to enhance her capacity, we offer the obvious advice that this should be explained to the relatives so that they share your understanding of the nature and purpose of this treatment. We also noted that Mrs D seems to have expressly requested that it is the doctors and not her relatives who should decide what to do.
On balance, the consensus in the group was to advise the team to offer as minimally invasive treatment as possible to enhance Mrs D's capacity. We did discuss the various treatment options available to Mrs D and of these which would represent the best balance of maximizing capacity while minimizing discomfort or risk, yet we were uncertain of whether two or three sessions of dialysis or the nephrostomies would be least invasive, particularly given that the catheter in her neck would have to be replaced, but noted that the urology team would probably want dialysis before performing the nephrostomies.
Question 2: How can we weigh the benefits of a pain-free death within days against the benefits of a few months of extra survival but with likely additional symptoms and treatments?
This is an extremely difficult question to answer as this is such a personal decision, and even within the treating team it is possible that no consensus could be reached about where the balance lies. We noted that Mrs D had previously led a very active and independent life and much may depend on the extent to which the available treatment could offer a return, even for a short period, to this kind of life (i.e. being able to live alone at home and visit her friends, etc.) or whether she would be likely confined to hospital.
We acknowledge that death from kidney failure can be a good death in the sense that it may be peaceful and largely without pain. As you acknowledge by asking your third question, however, it is not clear what the alternative death might be (for instance, what is her prognosis if the tumour is benign?). We were advised by one of our members that even with the best palliative care, around 20% of patients can be left with some form of pain.
We agreed, however, that on face value and given consideration of the balance of harms and benefits, either more aggressive or more conservative treatment could be permissible (because this is a very personal decision). However, if you are happy with our earlier suggestions to offer some minimally invasive therapy to enhance Mrs D's capacity, some of the urgency is removed from the situation and Mrs D may be more willing to engage with this kind of issue. Indeed, she might be willing to state a preference, thus making this personal decision for herself and relieving you of your dilemma.
We agreed that such short-term minimally invasive intervention to improve her capacity would not rob Mrs D of a peaceful death because if not repeated (in the case of dialysis) or if withdrawn (in the case of the nephrostomies), she would return to her current clinical state in a matter of a few days. We also noted that if treatment was started (either to enhance her capacity or in order to delay death), she may actually find that she does not agree with the decision you have made for her and may request that treatment is withdrawn. Such a refusal would need to be respected and may, again, relieve you of your dilemma.
Question 3: Is it acceptable for this decision to be made in the absence of diagnostic certainty?
Our answer to this question is ‘It depends’ for the following reasons:
It is reasonable for a competent patient to make a decision on the basis of uncertainty if this is what they chose to do. In this case, however, Mrs D has asked you to decide for her as her clinical team. In our view, if a decision is to be devolved to a clinical team (which may be avoided through limited initial treatment to maximize capacity) then ideally a decision should only be made if there is clinical certainty about the prognosis. While a patient can refuse treatment in the absence of diagnostic certainty, if this decision is to be made by a treatment team then all of the clinical facts should be in place before deciding. Here we lack information about why Mrs D seems unwilling to engage and this is why we propose minimally invasive treatment to restore capacity prior to making this kind of decision; It is difficult for the team to make a decision about what it is best to do without all of the clinical facts because forming a judgement in the light of what is known, and can be reasonably known (i.e. taking the burdens and benefits of testing into account and given the state of medical knowledge at the time), is part of the expertise in which she is choosing to place her trust; It is reasonable to decide to do what is minimally invasive to enhance her capacity without having clinical certainty because it may enable you to be more certain about her views, and will thereby give you more information (certainty of a different kind) upon which to base future decisions. It might be more difficult to make ‘bigger’ decisions on the basis of uncertainty – for instance, one of our members felt that as a relative she would be very uncomfortable if a team decided to allow her aunt to die from kidney failure without first being certain that she would in any event die from a malignant tumour; The team as a whole also has to decide for itself how comfortable it is with making decisions in the absence of certainty, and this may also depend upon what kind of decision is being made. This may require some discussion about what clinical certainty means (e.g. 100% certain? 95% certain? 90% certain?)
Concluding remarks
We suggest that you consider enhancing Mrs D's capacity using the most minimally invasive means possible to reduce the effects of uraemia. Given that it is likely that the urologists would want to give dialysis prior to performing nephrostomies, the most minimally invasive means of achieving this end would seem to give Mrs D two or three sessions of dialysis and then re-evaluate her position, having offered her the services of an advocate and a clinical psychologist. This course of action may give you some of the answers to your other questions, though we completely accept that Mrs D could remain firm in her view that her doctors should decide for her. Please contact Dr Alldrick, our Chair, if you are uncertain about anything in this summary, and please do come back to us to discuss this case further if you feel this would be useful or if you think that we have misunderstood either the facts of the case or your questions.
Members of CVCEC who contributed to this case
Delyth Alldrick, Chair and Consultant Psychiatrist for the Elderly; Helen Bennett, Head of Mental Health Nursing; Linda Gibbs, Assistant Director of Corporate Management; Eiddwen Glyn, Transplant Nurse Specialist; Yvonne Gordon, CVCEC Administrative Assistant/Medical Secretary; Dewi Holt, Clinical Scientist in Molecular Haematology; Angela Hughes, Care Pathways Coordinator; Alex Nute, Mental Health Nurse/Clinical Educator; Maurice Pendlebury, Non-Executive Director; Clare Quinn, Consultant Clinical Psychologist; Jane Rowlands-Mellor, Bereavement Advisor; Maria Roberts, Registered Nurse/Clinical Governance Facilitator; Tessa Shellens, Trust Solicitor; Wulf Stratling, Consultant Anaesthetist; Bob Woodward, Cardiff Community Health Council