Jockey Club End-of-Life Community Care Project
JCECC Capacity Building and Education Programmes on End-of-Life Care
Case: Mrs Cheung
Continuation of Dialysis Therapy
Mrs Cheung was a 75-year-old woman previously living alone and undertaking CAPD. She suffered a stroke with hemiplegia and became cognitively impaired. She could not take care of her CAPD anymore. There are no family members to help with the CAPD. She has assets and thus is not qualified for CSSA. Her children cannot afford private OAH with CAPD facilities. She is confused and cognitively impaired to an extent that she constantly pulled at her Tenckhoff catheter and required 24-hr restraints to prevent that. Now she has been staying for several months in the rehab hospital. What are the ethical concerns and what should be the approaches of the clinical team?
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– Dr. Christopher Lum, Consultant Geriatrician, Shatin Hospital
Older patients differ from younger patients in that they have multiple medical conditions rather than a single disease. Decision-making on the clinical management of a single medical disease is usually much more straightforward. Yet when multiple conditions set in, one has to set out a care plan using an integrative, whole-person approach.
This is illustrated in the case of Mrs Cheung, who was supposed to have only one single condition (chronic renal failure [CRF], was on renal replacement therapy [RRT]) and had been in a good physical state (lived alone and managed her own CAPD) following prior RRT. However, she suffered a stroke with cognitive impairment. She was left disabled and could not live alone or manage the RRT by herself. On numerous occasions she had also attempted to pull out her Tenckhoff catheter and needed to be restrained. The Clinical Team was likely to face a dilemma as to whether the RRT should be continued (beneficence). Since Mrs Cheung was reliant on the RRT, if it was withdrawn would it be equivalent to active euthanasia (maleficence) which is illegal in Hong Kong? She had also been in hospital for a long time, so was this fair to others who were waiting for rehabilitation (justice)? What overall care plan should be suggested to family members?
Of these questions, the one relating to justice is probably the easiest to answer. A doctor has a duty of care once a doctor-patient relationship is established, as in the case of Mrs Cheung. Though resources are scarce, it is unethical to “dispose” of Mrs Cheung without coordinating appropriate care. Under the Mental Ordinance of Hong Kong, one can apply through the Guardianship Board to appoint an official guardian to oversee a person’s finances (within limits), as well as his or her placement in and receipt of medical care. Although Mrs Cheung’s assets were likely to exceed the limits applicable to decisions made by the appointed guardian, family members could trigger Part II of the Ordinance to sell the assets through the High Court to finance her future care plan. This may take months to realize, and a discussion between the high-level hospital management and social welfare department is required with regard to interim discharge placement before a permanent decision is made.
Beneficence, non-maleficence, autonomy and justice have been the pillars of medical ethics for decades. Yet there is no hierarchical level applied to the pillars, what happens if one pillar contradicts the other (as in Mrs Cheung’s case in which elements of both beneficence and non-maleficence could apply)? A new approach, taking into consideration the medical indications, the patient’s preferences, quality of life and contextual factors, is recommended.
When it comes to assessing medical indications (medical beneficence and non-maleficence), one has to adopt an integrative, whole-person approach. As in Mrs Cheung’s situation and before her stroke, the RRT had benefited her, offering increased survival potential and reduced symptoms of CRF. However, the benefit of RRT is likely to be greatly attenuated due to significant functional limitations following the stroke. Although there was little information on her detailed functional state, she was likely to be in the frail category which is an independent predictor of falls, hospitalization and even death. On top of this, she had to be restrained and was predisposed to all of the hospital-acquired complications including autonomic dysfunction, sphincter problems, infections and pressure-related skin injuries. In addition, her attempts to pull out the Tenckhoff catheter reduced the efficacy of the RRT and introduced the risk of visceral tears and peritonitis, which was the most significant element of maleficence. Overall, it was likely that the survival benefits of RRT would occur over days or weeks and this would be at the expense of repeated trauma and discomfort (both psychological and physical). On balance and given the current information, the overall benefits of the current medical intervention (continuation of RRT and restraining of the patient) were marginal. The balance might be tilted more towards intensive medical intervention (for RRT) if Mrs Cheung showed significant functional and cognitive improvement, resulting in her not needing to be restrained and not pulling out the Tenckhoff catheter.
On the aspect of the patient’s preferences, Mrs Cheung was cognitively impaired and could not make a logical judgement or decisions. One has to ask if she had previously made a decision regarding an Advance Directive (AD) or Advance Care Plan (ACP). Having said this, current AD / ACP forms do not have a category for “condition-specific items” (e.g. preference whether to use / not use CAPD). However, provided that the ACP (if one is available) is conducted properly, documented information on the patient’s values / preferences / least tolerable bodily state in life would give a guide to her personal preferences and choices. In Mrs Cheung’s case, I presumed she did not have an AD / ACP. One had to discuss with her family members whether she had ever expressed views on her goals and preferences for clinical management, and what physical state she would consider to be beyond acceptable.
Every individual may have different life values and it is difficult to generalize. Having said that, some domains are likely to be common – for example, respect, dignity, freedom and being free from pain / discomfort. Although we could not hold a meaningful conversation with Mrs Cheung, her act of repeatedly pulling out the Tenckhoff catheter would suggest she experienced the discomfort with it. She was “confused” and needed to be restrained. One wonders if the “confusion” was a natural act to remove the thing (Tenckhoff catheter) that was causing the discomfort. Yet being restrained resulted in more discomfort and distress (and possibly even more and extended discomfort beyond immediate harm, as discussed in the earlier paragraph on medical indications). If one factors this Quality of Life into the decision on medical indications, the results might tilt towards non-maleficence with the continuation of the RRT.
Since the patient was receiving ongoing RRT, there might have been concerns as to whether not continuing RRT was equivalent to active euthanasia. While taking action to end a life prematurely is considered active euthanasia and a criminal act in Hong Kong, withholding a futile treatment and allowing death to take its natural course is acceptable locally. In Hong Kong, a Chinese society where strong family ties prevail, it is advisable to listen to and to reach a consensus with (and among) family members
Overall, the essential question was whether Mrs Cheung would experience significant functional and cognitive improvement which would enable her to receive CAPD safely. One should discuss the medical conditions candidly with the family members (including their views on quality of life) using an integrated, whole-person assessment approach (instead of just from a medical or individual disease viewpoint), explore whether the patient had previously expressed any preferences regarding the goals of clinical management, give your recommendations based on the above and reach a consensus with the surrogates. During times of uncertainty, one may attempt a trial while hoping for the best, despite preparing for the worst. In Mrs Cheung’s case and assuming that the physical improvement had already plateaued off, one might suggest limited restraint (e.g. mitts only) to avoid her pulling out the Tenckhoff catheter. If this proved successful, all would be happy to see the extension of life within acceptable limitations. Previous discussions on the Guardianship Board application / High Court application to manage assets would also apply here. On the other hand, if Mrs Chung pulled out the Tenckhoff catheter again, not reinserting it and providing medical treatment alone to reduce distressful symptoms could be acceptable and might be in the best interests of Mrs Chung. Again this should be thoroughly discussed with family members. Consensus can commonly be reached when the healthcare team and family members both work together in partnership towards the common goal of the “best interests” of the patient.