Ethical decisions in Advance Care Plans
This is an essay that was written as part of my Master of Arts in Medical Ethics and Palliative Care. Advance Care Planning is ever important in geriatric medicine and so this essay is as relevant now as when it was written.
“It is unethical for health care professionals to abide by a patient’s wishes contained in an Advance Care Plan, as it is impossible for the competent patient who drafted it to have accurately anticipated their views in relation to circumstances which they might not have foreseen and which had not arisen at the time it was created.”
In this essay, I argue that healthcare professionals should always take into account the wish of an individual expressed in an Advance Care Plan (ACP). It allows that individual to make their voice heard amongst a discussion of healthcare professionals and should be reviewed whenever any decision is made concerning that individual. However, where circumstances arise where the ACP is in conflict with the best interests of that patient, then I believe it is unethical to continue to abide by the ACP. Firstly, I explain what an ACP is and how it differs from an Advance Directive to Refuse Treatment (ADRT). Secondly, I discuss dementia and why for an individual that has been diagnosed with dementia, the concept of planning for the future can be very reassuring. Thirdly, I discuss how an ACP allows autonomy to extend beyond the point where an individual can no longer engage in competent discussions. I counter this with a discussion on the limitations of autonomous decision making with regard to future events. These limitations include the quality of the discussion and those facilitating the discussions, unpredictable developments in medical technology and the influence of the family unit. I address the limitations of an ACP once capacity has been lost, in particular the binding nature of a past directive.
In the next section I discuss the idea of the ‘self.’ In addition, I argue that we need to treat the person in front of us who may well differ in personality and goals from the individual who originally drafted the ACP, prior to losing their capacity. However, I emphasise that the ACP should always be reviewed and acknowledged when faced with difficult decision making. Finally, I argue that the overriding principle should be beneficence and that in the situation where the ACP is not inline with this then we should act in the best interests of the individual, whilst ensuring that we bear in mind the ACP decisions and do what we can to facilitate these as much as possible.
An ACP is a series of discussions that is had between a patient and healthcare professionals over an extended period of time. It often comes about when a patient faces a life limiting disease or nearing the end of life. The patient freely enters into such discussions with a focus on anticipating circumstances and making plans for the future. By discussing in advance, it removes the pressures and anguish when faced by an acute event requiring an equally acute decision. To some extent it removes the fear of the unknown. However, like anything in life, such discussions cannot predict the future.
Patients often want the reassurance that their wishes will be followed in circumstances where they are no longer able to express their wishes. Further to this, an ACP may prompt individuals to nominate a proxy via lasting power of attorney to make such decisions on their behalf, should they lose their capacity. Thus, an ACP is not a one size fits all process. It is an open process with patients discussing all aspects of the future, in a holistic manner.
Discussions are shaped by an individuals wishes, fears and beliefs that shape their decisions and spiritual needs. The discussions aim to include all who the patient considers important. Disease trajectory is discussed, as well as cardiopulmonary resuscitation. Preferred place of care is another key area for discussion.
The difficulties of ACP is knowing what the future holds and how the patient will react at that moment in time. Life changes, people change and the disease process itself may change their mindset or personality. Other hurdles include availability of documentation, particularly when in the acute situation. Although ACPs are in depth discussions for what a patient wishes towards the end of their life, they are not a
legally binding document; whereas an Advance Directive to Refuse Treatment (ADRT) is a legally binding document.
An ADRT is a discussion around treatments or interventions that the patient does not want, under any circumstances. It is an advance document that becomes active in circumstances where the patient has lost their capacity. Legally, patients cannot ask for a treatment but can specify a treatment or intervention that they do not want. It usually entails a discussion regarding major interventions in a patients disease journey, such as parenteral feeding or ventilation. Once an ADRT is completed, signed by the patient and witnessed, it is a legally binding document. This means that the healthcare professional must abide by the ADRT whenever the incapacitated patient is in a situation that meets the circumstances laid out in the ADRT. As with an ACP, the major issues faced by healthcare practitioners is that of having access to the document and interpretation of the circumstances. There is much to say on ADRT and many of the ethical issues overlap with those of Advance Care Planning, however, there are others which are beyond the scope of this particular discussion.
As ACPs are not legally binding, they may be seen to be open to interpretation by healthcare practitioners and no more so than in unexpected situations. In such cases, the benefits of an ACP is that it gives “a flavour” of the person and so goes a long way to contributing towards the final decision. For the remainder of this essay, I will be using dementia to illustrate my arguments, although the steps and considerations involved in formulating an ACP are the same for all disease processes.
Dementia is a progressive, irreversible, neurological disease. Whilst it has a multitude of effects on the health of the individual affected, it is predominantly recognised by a global impairment of cognition, particularly with regard to understanding, retention and communication of information. These are the three steps required to successfully formulate a decision. Thus, it is easy to see why, for a patient that has been diagnosed with dementia, the concept of planning for the future can be very important.
Autonomy is a key principle of an ACP. By discussing the future and making informed choices about future healthcare needs or events, it allows patients to extend their autonomy into the future beyond the point where they are no longer able to engage in meaningful discussions. Particularly when the disease trajectory is unpredictable. It can be difficult to know when the patient will tip beyond the point of having capacity. However, I do believe that there are limitations with regard to autonomous decisions relating to unknown future events.
Firstly, discussions are only as good as the person with whom the discussion occurs and the information provided. It should ideally be with those people with expertise in dementia and particularly end stage dementia, such as physicians, nursing staff, caregivers and individuals already diagnosed with the disease. The quality of the discussion is very important. A good discussion would include the factors that would lead to the implementation of the directive, what life would be like at various stages of the disease, and how invasive and effective various interventions might be (Dresser, 1999). An ACP cannot be discussed in one sitting. It is a highly personal discussion for the individual and may well be an emotional one. Given that in states of high emotion, people tend not to remember more than 15-20% of what was discussed, it is important issues are revisited.
With regard to the quality of the discussion;one would suggest that there is no point in having multiple discussions about dementia, without discussing antibiotics. The leading cause of mortality is pneumonia and if this has never been discussed and the event arises then the patient has lost out on their opportunity to express their wishes with regard to their disease journey. I believe that the emphasis is on the healthcare professional, to ensure that the competent patient is presented with all the information so that meaningful discussions and decisions can be had.
Secondly, no matter how high quality the discussion is, advances in medical pharmacology, technology or surgical skills, may mean that the treatment options originally discussed have been superseded. This limitation is one that must be addressed at the time that the acute event should arise and I can see no way around this.
Thirdly, a discussion is very rarely a discussion with one individual. Nearly all those diagnosed with dementia are over 65, and the majority have ties with family or friends. These are the people who they value and who make up their family unit. People of this age have also lived a life. They have felt love and grief, have witnessed life and death. They may have formed their own ideas of how they want the remainder of their life to be lived and may have also contemplated their death. For such an individual therefore, to have a discussion about their future wishes in isolation from all that they value, is near impossible.
All families have unique dynamics. No one family is the same. A patient who has been given such a diagnosis, will certainly consider how it will affect those concerned. The decisions they make, may well be shaped by how positive or negative those dynamics may be. For example, if an individual has a loving and supportive family, who have said that they will be there no matter what, then that individual may decide that they would pursue a more aggressive treatment option then someone who has a distant or estranged family. Of course, as a function of ageing, regardless of whether cognition is affected or not, an individual may also become more vulnerable physically or financially. In such cases, there may also be a danger that decisions are made due to pressure or coercion from family or friends. This demonstrates that such discussions, whilst needing to address all whom the individual holds dear, may directly influence autonomous decisions made at that moment in time.
A further limitation, is the concern that if there is a change in their hopes and goals for the future after they have been deemed to have lost capacity, they are no longer able to make changes to their own individual ACP. For example, if a family situation changes, such as the death of a partner or family moving closer, it may well alter that patients outlook on the future. If however, the patient has lost their capacity, then they are unable to adjust their ACP. The point is, that if the ACP cannot be reviewed and it is adhered to, regardless of how the individual feels about life now, they have already made a decision in their past that they must abide be.
Imagine an 85 year old female, let’s call her Doris, living in a care home with dementia. She needs help with much of her personal care, but is mobile with a zimmer frame and likes to choose her own meals and feed herself. She can partake in simple conversations but needs prompting. She drafted an ACP at the age of 76 when the diagnosis was made. At that time, she had just lost her husband and her daughter was living in Australia, so felt she didn't have much to live for. Doris decided that if she required admission to hospital for treatment of a pneumonia on more than two occasions then she would rather stay at the home and be treated symptomatically. Now we are ten years down the line. Her daughter has returned from Australia and with her has come her Granddaughter. Her Granddaughter is getting married in two weeks and Doris when reminded, says she is looking forward to it. Doris has already been admitted to hospital twice with pneumonia in the past year. She is now unwell, drowsy and requires admission. The GP feels that IV antibiotics will work and should settle things, and the GP believes that Doris does want to go to her Granddaughter’s wedding.
Luckily for Doris, an ACP is not legally binding. She is admitted, despite her ACP and does attend the wedding. “No man is an island”; for Doris, what was important to her was getting to her Granddaughter’s wedding. If the GP had felt that Doris would not survive regardless of the IV antibiotics, then to keep her at the home with symptomatic care would have been the right thing to do too. This is what happened, when Doris had her next bout of pneumonia, one month later.
So to reiterate three points. Firstly, it is rare for an individual to make life and death decisions without considering their loved ones and such circumstances can unexpectedly change over time. Secondly, regardless of what the ACP states, circumstances may change to the point where the right thing for the patents welfare may be to override the ACP, this will be discussed in a further section. Thirdly, none can predict the future and no amount of planning can always prepare one for the future. However, the ACP can still give a voice to the individual. Doris did not want the endless trips in and out of hospital to prolong her life, she had arbitrarily chosen two admissions as her cut off. However, when she had something to look forward to and live for, it was felt that at that moment in time, the right thing was to enable her to enjoy one last fun event, rather than prescriptively following a document written a decade ago when Doris felt lonely. This then leads on to a discussion concerning the ‘self’ which is an important aspect to consider when considering diseases that lead to a loss of capacity.
Dementia is a disease that can bring about extreme changes in personality or ‘self,’ to the point where the pre dementia individual and the post dementia individual appear to be a different person. The cognitive decline and personality changes are on a spectrum. In the advanced stages, the disease may rob the individual of almost everything that made them who they were. It is as if they have lost their very identity. This raises the question of whether the person with end stage dementia, is still the person who made an ACP in the past when they were able to make autonomous decisions. This is important because if the person now, is no longer the same person, is the ACP morally valid? (Vollman and Vollman, 2001)
One perspective on this sense of ‘self’ is that end stage dementia is a continuum of an individuals life, and that every effort should be made to adhere to what the individual wanted when they had capacity and were able to make an autonomous decision. This is regardless of whether the patient in front of us now, is requesting something different or would benefit from a different approach. Dworkin has done a lot of work around this and suggests that autonomy is used to protect capacity. If one has lost capacity “then that person has no right that any decision be respected just out of concern for their autonomy.” His argument is that the integrity view of competence, based on “a judgement about the overall shape of the kind of life he wants to have led,” asserts that we should only abide by decisions by a patient before they were incapacitated as they are the only ones that are authentic in that patients life (Dworkin, 1999, pp. 305 – 311). Abiding by an already prescribed ACP will certainly avoid paternalistic decisions. However, I assert that this is far too rigid and does not take into account those unexpected events where beneficence and non maleficence should come to the fore. I also suggest that not to accept any autonomous decision made by an individual with dementia is cruel.
The second perspective is the opposite and suggests that with the emergence of a new ‘second’ person, ACPs lack validity because this second person is an altogether different person. The loss of personal identity and lack of mental continuity from the pre dementia patient means that those decisions made in the past are not right for this new person and thus cannot be acknowledged whatsoever (Vollman and Vollman, 2001). This tips the balance of paternalism too far the other way and robs that pre dementia individual of any autonomy or direction over their life.
I find both concepts unsettling. Life is never black and white, so why should the culmination of ones life be seen in such a way. Therefore, the most sensible approach would be that of the middle ground. ACPs are important to allow individuals to exert their autonomy and have a voice in the future, but do need to be open to interpretation in the light of the current situation, particularly when considering an individuals welfare, which I will now discuss in more detail.
Beneficence plays a crucial role in considering patients who have lost their capacity. It is the notion of doing an action that will be benefit the patient and optimise their welfare. When faced with an incapacitated unwell patient, healthcare professionals always try to act in a beneficent manner. However, difficulties arise when faced with an ACP that may suggest management that is contrary to this principle, and can be problematic ethically for the healthcare professional.
An example is that of an individual who has specifically stated that they do not want to be admitted to hospital and would prefer to remain in the community to be managed symptomatically until their death. However, they have had a fall and this has resulted in a displaced fractured neck of femur. The patient in front of us is unable to partake in any discussions with regard to care. The only realistic management is for an operative procedure to fix and stabilise the fracture. The pain associated with a displaced neck of femur fracture is excruciating. Mobility is limited as a result and it can impede even the simplest of care, such as turning. It is associated with multiple complications such as blood clots in the legs and lungs, pressure sores and a multitude of infections. Eventually, with ever increasing levels of pain it can lead to death. Not all patients require an operation, it is not unheard of for someone to break their hip and still manage to mobilise. However, this rarely occurs in the cohort of patients with dementia and extreme physical frailty. The operation is not without its risks. There is the general anaesthetic, intra operative risks and post operative complications. The fact that it alleviates the pain, which is incredibly difficult to manage with analgesia alone, means that only those who are imminently dying are excluded from the procedure. Even those who have a high risk of dying on the table are taken to theatre because the overall benefit outweighs the risks (Izzard and Aitken, 2012).
Armed with this information, most healthcare practitioners, would not think twice about admitting such a patient to hospital, even if the ACP explicitly states not for readmission. The aim of admission is not necessarily to prolong life, it is to improve quality of life. A swift discharge can be arranged, assuming they survive the admission and then a no readmission policy can be implemented, provided that it can be safely implemented in the community.
Although, we have to respect the autonomy of the patient who wrote the directive any number of years ago. Our priority is to the patient in front of us now with a fractured neck of femur. The directive serves to give us a ‘flavour’ of that patient and it is clear that they do not want multiple admissions. However, it would definitely be an act of maleficence and non beneficence if the patient in front of us were crying with pain asking for help and we did nothing. Frankly, it would be inhumane.
Even if someone had foreseen the possibility of a hip fracture, it is very unlikely that they could really comprehend the pain of actually having one. If on the other hand we were faced with a competent patient, who adamantly refused admission. I am certain that all manner of healthcare professionals would talk to that patient explaining risks and complications. If they still did not consent to admission, then at least we have a contemporaneous decision. If they later lost their capacity, it would not be the right thing to then override their decision. This is because that individual is there, in the present moment, experiencing the event and having weighed up the pros and cons has come to their decision. This is not the case in patients with advanced dementia. The decisions may have been made many years ago and whilst we need to respect what they then wanted for themselves in the future, we are now faced with a frail person, quite possibly a different ‘self,’ whose welfare is our primary concern. Thus, I consider beneficence to be the overriding principle. Whilst I believe it is right to do ones very best to adhere to an individuals ACP decisions, if these are in conflict with what is in the best interests of that individual and a compromise cannot be reached to bring these into line, then I do believe it is right for the healthcare professional to override that ACP.
On the other hand, if the same patient developed pneumonia and they did not want readmission then this can very effectively be managed in the community. The patient cannot have IV antibiotics but a trial of oral antibiotics can be trialled if not precluded by the ACP, otherwise, good symptomatic care can be provided until that patient passes way.
Whilst it seems that we are overstepping the autonomy of the former patient, whilst respecting that of the second. In my mind, it is more about the beneficence and non maleficence associated with the care of each patient. Both patients are unwell, both are in the twilight days or weeks of their life and both are going to die. However, for the latter patient, there is a good system in place to make those final days comfortable and thus respect their wishes. For the former however, if we respect their wishes, we inflict pain and further harm upon them. It is right that an ACP is not legally binding. Peoples wishes and health changes, and physicians need that flexibility to periodically make paternalistic decisions for the greater good of that individual.
Sometimes, admission is the right thing to do and sometimes, the right place to die is in hospital. A rather fitting quote is: “sometimes accomplishing one’s wishes is particularly complex when placed within the real world of possible complications and suffering associated with the symptoms of progressive dementia (Rempusheski and Hurley, 2000).”
It is not unethical to abide by an ACP unless circumstances arise that are in conflict with the best interests of the patient in front of you. Given the nature of dementia, it is likely that that individual now is a different ‘self’ to the individual who wrote the ACP many years before. Yet it is to the individual before us to whom we owe our care.
Whilst every effort can go into ensuring that ACPs are comprehensive, not every eventuality can be predicted. I believe, it would be unethical to completely disregard an ACP. Whilst it is not ethically right to always abide by its rigid, sometimes impractical statements. It is the lasting wishes of the person, now lost to dementia, about what they would wish for the future and it is something that should always be “heard” when unexpected circumstances arise.
Photo Credit: John Jennings