Mr Shi

Decisions about life-sustaining medical treatments take place in many different settings.  While these decisions may be associated with high-tech settings such as the Intensive Care Unit (ICU), they start within the real life of a real person. Mr Shi, a gentleman now in his 80s, had started thinking about his own values and preferences concerning life-sustaining treatment much earlier in his life. He had observed his own mother’s cognitive deterioration from Alzheimer’s disease, and had decided that, should he himself develop the same disease, he would not want ‘extreme’ measures undertaken to prolong his life. As part of handing over the family business to his eldest son, he had told him about his concerns. Like many families, the Shis were a bit uncomfortable talking about personal matters, and this discussion did not fully clarify what Mr Shi meant by ‘extreme’ or ‘active’. Still, he raised the topic, and described his values and preferences in a way that would provide some guidance to a family member making decisions on his behalf.

Turning to the scene in Dr Huang’s office – many years after Mr Shi’s conversation with his eldest son Jonathan, and two years after changes in Mr Shi’s behaviour began to be observed by his wife, Mdm Poh – it is evident that there is confusion about several questions, all with ethical relevance:

Is a pacemaker a medical treatment?

Pacemakers that maintain cardiac health and other cardiovascular implantable electronic devices (CIEDs) that prevent sudden cardiac death are medical treatments that a patient can choose to start, to refuse, or to stop. Decision-making about CIEDs should include discussion of how a device can be deactivated or removed.

Who should make the decision about the pacemaker?

It is not yet clear whether Mr Shi currently has the capacity to make this or other medical decisions. While Mr Shi’s family and two physicians have observed signs that may or may not indicate the early stages of Alzheimer’s disease, it is also unclear whether Mr Shi does, in fact, have Alzheimer’s, or if some other, possibly treatable, condition is causing these symptoms. An Alzheimer’s diagnosis would not, in itself, rule out capacity. Before a decision about cardiac treatment is made, Mr Shi should be evaluated by a professional with expert knowledge of Alzheimer’s (typically, a geriatrician, neurologist, or psychiatrist) to determine whether Mr Shi has this condition.

In this case, it may make practical sense for the specialist who will evaluate Mr Shi for the signs and symptoms of Alzheimer’s to conduct the assessment of his current capacity to make medical decisions. However, the evaluation of Mr Shi’s medical decision-making capacity can be done by Dr Siak – the general practitioner, or Dr Huang – the cardiologist, as every clinician should know how to conduct a capacity evaluation.

If the clinical evaluation finds that Mr Shi has decision-making capacity, Mr Shi should make the decision about the pacemaker. But, if the clinical evaluation finds that Mr Shi’s capacity to make medical decisions is impaired, Singapore’s Mental Capacity Act (MCA) invests physicians with the authority to make decisions concerning potentially life-sustaining treatment. The MCA directs physicians to consult with the donee or donees designated in a patient’s Lasting Power of Attorney (LPA) to make decisions that are in a patient’s best interests. Even if a currently incapacitated patient has not completed an LPA, a physician should consult with the patient’s family to gain insight into the patient’s values and preferences. Because Mr Shi discussed his preferences with his eldest son in the context of handing over family responsibilities and subsequently told his GP to confer with Mdm Poh and Jonathan, Mr Shi may think (or hope) that his wife and his son will be able to collaborate to make medical decisions if he is unable to do so.

Patients who lack decision-making capacity may still be able to express preferences – for example, about how they want to spend time, or the procedures or settings they want to avoid. Even if he is determined to lack medical decision-making capacity for this decision, Mr Shi may be able to participate in other medical decisions, and should have opportunity to do so if he wishes to.

What should Dr Huang be prepared to discuss with this patient and family?

While a pacemaker may seem like a simple ‘fix’ for Mr Shi’s heart problem, this patient has expressed clear preferences about medical treatment should he develop Alzheimer’s.  So Dr Huang and the Shi family need to know whether or not Mr Shi does, in fact, have Alzheimer’s. This information matters whether it is Mr Shi, or someone else, making the decision. If Mr Shi does have Alzheimer’s but is still relatively healthy now, would a pacemaker help him to ‘stay active’? Or would a pacemaker be an example of the ‘extreme’ measures he hopes to avoid?

Other questions are likely to come up relative to Mr Shi’s preferences. Would it be possible to implant a pacemaker now and deactivate it in the future should Mr Shi become physically as well as cognitively incapacitated? How would a decision to forgo a pacemaker affect Mr Shi’s life now and going forward?

There is already tension between two family members who are both trying to advocate for Mr Shi. Mdm Poh may be the closest observer of her husband’s day-to-day behaviour. Jonathan Shi has known of his father’s preferences for years and has shared them with his mother and brother and with Dr Huang. The cardiologist is new on the scene, but needs to be prepared to help her patient and his devoted family work together.  She needs to avoid rushing to the decision, and should instead help the family to reframe how they are talking about the decision. Dr Huang can reassure Mdm Poh and Jonathan Shi that this may not be an immediate ‘life-or-death’ decision, and that clarifying Mr Shi’s current diagnosis, his decision-making capacity, and his preferences are all relevant to a decision at hand.

These discussions should involve Mr Shi himself. This is an important point, because this relatively healthy patient is at risk of being overlooked – being spoken about, rather than being included in discussions about his life and preferences. When Mr Shi gave Dr Huang permission to share medical information with Mr Shi’s wife and son, this did not mean that Mr Shi should be excluded from receiving this same information or that he was delegating decision-making authority. Mr Shi may be the person, in fact, who can address the questions and concerns of those closest to him.

This case raises two questions that have to be addressed independently from one another before a treatment decision can be made:

Does Mr Shi have Alzheimer’s Disease?

This is a diagnostic question. The question of whether or not Mr Shi has Alzheimer’s does not, on its own, have special legal significance. What is important is whether he possesses the capacity to make medical decisions.

Does Mr Shi have the capacity to make this treatment decision?

This is a clinical, ethical, and legal question, involving a clinical assessment of decision-making capacity in accordance with the Singapore Mental Capacity Act (MCA).

Keeping these two questions in mind, we can see four possible scenarios:

Four possibilities

One possibility is that Mr Shi has been diagnosed with Alzheimer’s and has also been determined to lack decision-making capacity, whether because of the progression of the Alzheimer’s or from some other cause. Therefore, under the MCA, Dr Siak or Dr Huang (or both, in collaboration) will make a best interests decision in consultation with Mr Shi, as he is willing and able, and with Mr Shi’s family.

Another possibility is that Mr Shi has Alzheimer’s and has been determined to have decision-making capacity at this time. Therefore, under the MCA, Mr Shi has the right to make decisions. Because Mr Shi will eventually lose the capacity to make medical decisions due to the cognitive impairment associated with the progression of Alzheimer’s, advance care planning (ACP) would be an important option for Dr Siak or Dr Huang to introduce to Mr Shi and his family, to document Mr Shi’s preferences and establish a framework for future decisions about treatment and care.

Yet another possibility is that Mr Shi does not have Alzheimer’s and has been determined to lack decision-making capacity. Therefore, under the MCA, Dr Siak or Dr Huang have the authority to make a best interests decision in consultation with Mr Shi (as willing and able) and his family. However, the physician with decision-making authority should always consider whether the patient’s capacity may be restored once another medical problem is resolved. Even if it is necessary to make a best interests decision about a particular intervention, the physician should keep in mind, and explain to the patient and family, that decision-making authority reverts to the patient if the patient is subsequently determined to have capacity. Some patients’ capacity will periodically fluctuate, and some patients will have the capacity to make some decisions but not others.

A final possibility is that Mr Shi does not have Alzheimer’s and has been determined to have decision-making capacity at this time. Therefore, Mr Shi makes the decision. ACP would be an important option to introduce, as Mr Shi has expressed preferences and ACP is a means of documenting them.

Mr Shi, who has impaired decision-making capacity that appears to be caused by Alzheimer’s disease, is being offered implantation of a permanent pacemaker. This device is indicated in patients with abnormally slow heart rates in order to treat symptoms such as fatigue, lightheadedness, and fainting. It can be life-saving in conditions such complete heart block. The dilemma facing his wife and son, who are involved in making decisions on his behalf, is the earlier verbal directive where Mr Shi indicated that if he lost cognitive ability, he did not want ‘anything extreme’.

To understand this decision, they, and Mr Shi, need both physicians – the cardiologist and the primary care doctor – to address these questions:

Is the implantation of a permanent pacemaker an ‘extreme’ medical intervention?

The procedure itself is usually performed under mild sedation and local anaesthesia, and typically lasts less than one hour. An incision is made below the left collarbone to create a small pocket under the skin and pacing wires are threaded to the heart under X-ray guidance. Complications are rare and include infection, bleeding, and inadvertent puncture of either the lung or the heart. Once implanted, only minor modifications are required to the patient’s lifestyle. Periodic pacemaker checks every 6 months are recommended and this is increasingly performed by remote monitoring. After initial recovery, there is minimal discomfort, although vehicle seat belts that strap across the left shoulder can be uncomfortable. Mobile telephones and security metal detectors can also be used without major concern. Battery replacement may necessitate a minor medical procedure every 5 to 10 years.

A pacemaker can be easily deactivated if the continued use is considered no longer in keeping with the goals of care. However, pacemaker implantation is the invasive placement of an expensive device into the body under X-ray guidance. This procedure carries significant risks, but once in place, there are almost no risks or discomfort associated with continued pacing. Most patients even forget that it is even there. Hence, unlike many other interventions, there are no significant burdens of continued therapy and hence little impetus to discontinue the intervention from the perspective of causing ‘harm’ to the patient. This is in marked contrast to therapy such as mechanical ventilation where continued treatment carries high risks and discomfort, over and above the risk that the initiation of therapy (i.e. intubation) carries. The pacemaker is a classic example where the withdrawal of a medical intervention can be very difficult for physicians in practice.

Beyond explaining the procedure, and the benefits, burdens, and risks of implanting and using a pacemaker, talking about what Mr Shi meant when he told his son that he didn’t want ‘anything extreme’ is essential. Mr Shi should be part of the discussion on ‘extreme’ medical interventions; the facts of the case do not suggest any reason for excluding him.

Is it necessary to make a confirmed diagnosis of Alzheimer’s disease?

Capacity is assessed by reviewing the patient’s ability to understand relevant information, retain and use it as part of a decision-making process before being able to communicate that decision to healthcare providers. This ability is decision-specific. There is a suggestion in the scenario that Mr Shi may struggle with various elements required for capacity even if the necessary information was provided in lay language.

Whether decision-making incapacity is temporary, fluctuating, or permanent is determined by the underlying aetiology. Alzheimer’s disease involves progressive degeneration and cannot be cured. However, a confirmed diagnosis in itself does not exclude patients from all decision-making. This disease is diagnosed using the patient’s history of symptoms, collateral information from relatives and clinical observations of cognitive impairment. In the early stages, the diagnosis can be challenging and can require both expert review and neuropsychological testing. Blood investigations are often performed to exclude reversible causes of dementia such as hypothyroidism, neuro-syphilis and vitamin B12 deficiency. In addition, pharmacological therapy for mild to moderate Alzheimer’s disease can result in modest improvements in memory. These interventions can improve Mr Shi’s cognitive ability and help him participate in the decision-making process relating to the implantation of the pacemaker.

Summing up

The doctors can help Mr Shi and his family by clarifying the goals of care, improving their understanding of the issues involved and facilitating the patient’s involvement in the decision-making process. This can only be achieved by actively listening to concerns, making comprehensive assessments and explaining medical interventions in unambiguous language. It should be remembered that as doctors advocating for Mr Shi, they are not passive technicians in these discussions allowing families to grapple with the decisions on their own. Doctors, while humbly understanding their own limitations in the appreciation of quality of life values, should not forget that they have a fiduciary obligation to advocate for the optimal line of treatment from the medical perspective.