A plea for end-of-life discussions with patients suffering from Huntington's disease: the role of the physician
- 1Department of Neurology, LUMC, Leiden, The Netherlands
- 2Department of Medical Ethics and Health Law, LUMC, Leiden, The Netherlands
- 3Centre for Human and Clinical Genetics, LUMC, Leiden, The Netherlands
- Correspondence to Dr Suzanne J Booij, Department of Neurology, LUMC, PO Box 9600, Leiden 2300 RC, The Netherlands;
- Received 9 November 2011
- Revised 8 November 2012
- Accepted 25 November 2012
- Published Online First 22 December 2012
Euthanasia and physician-assisted suicide (PAS) by request and/or based on an advance directive are legal in The Netherlands under strict conditions, thus providing options for patients with Huntington's disease (HD) and other neurodegenerative diseases to stay in control and choose their end of life. HD is an inherited progressive disease characterised by chorea and hypokinesia, psychiatric symptoms and dementia. From a qualitative study based on interviews with 15 physicians experienced in treating HD, several ethical issues emerged. Consideration of these aspects leads to a discussion about the professional role of a physician in relation to the personal autonomy of a patient. Such a discussion can raise awareness that talking about end-of-life wishes with an HD patient is part of the legal, professional and moral responsibility of the physician, and that a letter of intent on behalf of the physician can improve active participation in the process. Discussion of these issues can help to advance the debate on euthanasia and PAS in HD and other neurodegenerative diseases.
In The Netherlands the euthanasia act was approved by parliament in 2002. Euthanasia and physician-assisted suicide (PAS) are considered to be legitimate provided strict conditions are met. Approximately 7% of Dutch inhabitants have an advance directive, usually consisting of a euthanasia request, mainly as a precautionary measure in anticipation of possible dementia.1 Euthanasia is legitimate based on an advance directive, but it is seldom performed because of response shift or loss of competence and because physicians hesitate to perform euthanasia based solely on an advance directive.1–4 Response shift means adapting to the disease or deviating from anticipatory beliefs.
Huntington's disease (HD) is an inherited autosomal dominant progressive neurodegenerative disease, characterised by chorea and hypokinesia, psychiatric symptoms and progressive dementia. The age of onset is usually between 30 and 50 years of age.5 Despite symptomatic treatment, no cure is available and all patients will eventually become totally dependent for all daily life activities. There are approximately 1700 HD patients in The Netherlands and about 5000–8000 persons are at risk. Between six and 10 euthanasia requests in cases of HD have been granted in The Netherlands each year for the past 5 years.6
As HD is inherited, there is no doubt about the diagnosis after genetic testing and the course of the disease is usually known to patients and their families, HD can be used as an example for thinking about end-of-life questions in a disease where cognitive decline is a key symptom and the ethical dilemmas surrounding this subject. By exploring these questions with patients, especially in the premanifest phase, solutions can probably be implemented and may also enhance treatment and guidance in patients with other neurodegenerative diseases. Besides clinical experience we are not aware of studies on euthanasia or PAS or other end-of-life questions in patients with HD.
The aim of this study is to explore the role of the physician when it comes to talking about end-of-life wishes and the value of an advance directive, including its content. From the results we propose a new strategy for the treatment and guidance of patients and for dealing with end-of-life wishes in patients with other neurodegenerative diseases.
Between January 2011 and May 2011, a semistructured interview with 15 physicians was conducted. The physicians were recruited because of their experience with HD and their different fields of expertise. Our sample consisted of four general practitioners, two psychiatrists, two neurologists and seven nursing home physicians. Respondents were interviewed based on the method of purposive sampling, a commonly used form of non-probability sampling. Sample size relies on the concept of ‘saturation’ or the point at which no new thematic content is observed in the data. Thematic saturation was reached after approximately 12 interviews. Although based on a topic list, the items covered by the interview could be expanded on during the interview phase, if new information or new insights emerged.7 Interview topics included the communication about euthanasia/PAS with patients, experience with and moral considerations about euthanasia or PAS in HD, experience with advance directives in HD and management of symptoms of HD in particular cognitive decline and psychiatric symptoms. We also addressed the participants’ perception of the reasons why patients want to talk about this subject with their physician and possible limitations to executing an advance directive. The questions were directed towards cases of HD, but sometimes other experiences were also mentioned and discussed. All interviews were recorded and fully transcribed. As our study was explorative, we used open coding. The transcripts were read and categorised into similar subject areas using inductive coding.7 Representative quotations were chosen to demonstrate the themes identified.
All physicians have more than 5 years experience in their field of expertise. Two general practitioners had a HD patient in their practice and performed euthanasia and two have a HD patient with whom they discuss their advance directive regularly. The nursing home physicians all work or worked in specialised HD units of a nursing home, except one. Three nursing home physicians performed euthanasia or PAS in HD. The psychiatrists and neurologists are specialised in HD (table 1).
Conversations about end-of-life wishes
Most respondents feel that talking about end-of-life wishes can bring peace of mind to a patient and that having the conversation sometimes makes the subject less pressing.
Respondent (R) 13: ‘If subjects are not talked about, they become bigger. So I believe that if you discuss it regularly it can prevent euthanasia, or to put it differently, it can have the result that patients decide they no longer want euthanasia; it is no longer necessary.’ R 4: ‘A more peaceful state of mind can be achieved when a patient talks about euthanasia. Peace in the knowledge that they will get help when needed. If counselling and support are provided in most cases you will not reach the point of really considering euthanasia.’
Some respondents indicated some hesitation to start the conversation. R 13: ‘I talk about the subject when a patient starts the conversation. I do not enter into the conversation spontaneously. Not because I think it is difficult, but because I leave it up to the patient to express themselves about this subject.’ R 15: ‘I do not consider talking about euthanasia to be part of my job. Unless the conversation is initiated by the patient.’ R 14: ‘I never ask about this myself. Because I feel that a patient should start the conversation. I thought about this for a long time, but I feel that if a patient is afraid to talk about the subject of euthanasia, then the patient is not ready for it.’
On the other hand, respondents remarked that euthanasia and/or PAS is an option a patient should know about. R 2: ‘I told my patient, I'm open to talk about the subject and to perform euthanasia, but it is a journey we should make together.’ R 1: ‘I promised my patient I would help him, although this promise was emotionally difficult for me as a physician.’
Advance directives and the role of the physician
The respondents explore the reasons for thinking about drawing up an advance directive with their patients. R 6: ‘The advantage of this disease is that patients do have some idea about what their future will be like. Many of them think about the end of life.’
The physicians usually also explain to the patient what they can expect from their physician, especially if the questions concern euthanasia or PAS. The physicians explain that drawing up an advance directive is letting the physician know what your wishes and values are, but it is not a guarantee that the result wished for by the patient will be reached. R 4: ‘He trusts us that we will help him in due course. Although I always tell all my patients that euthanasia is not a right.’ General practitioners usually discuss the advance directive frequently when the wish becomes current or pressing and when it is brought up by the patient. Otherwise the advance directive becomes part of the patients’ file.
When the interviewer mentioned that euthanasia or PAS is possible based on a request by advance directive, several physicians responded that an advance directive was a useful and helpful document in determining the will of the patient, but not a document on which they would act. R 6: ‘It is the actual wish that counts. If this wish no longer exists, the advance directive also becomes invalid.’ R 10: ‘I respond to the will expressed during conversation. But I have to say, if someone has taken the effort to draw up an advance directive, it means something. But the actual will is more important.’
Conversations about end-of-life wishes
In The Netherlands, patients are allowed to make choices regarding end-of-life wishes and to express these to their physician. Physicians in this study recognise the fact that HD patients think about the end of life and have end-of-life wishes, but do not initiate a conversation about this subject. And although advance directives are used, physicians do not act solely on the basis of an advance directive.
We find there are three reasons why a physician should have a duty to explicitly discuss end-of-life wishes with patients diagnosed with HD.
From a legal point of view a physician is bound to inform the patient about his prospects with regard to the disease and treatment options (Civil Code art 7:448, paragraph 2). In this part of the Civil Code, parliament defined patient rights. Parliament also decided to place the physician at the centre of medical treatment. During the development of the euthanasia act, however, parliament decided that euthanasia should be excluded from normal medical treatment. Parliament chose the position of the physician and his conflict of duties with respect to euthanasia (respect for human life vs the wish of a suffering patient) as the central issue and not the patient and his personal autonomy.8 This choice by parliament also means that a physician is not obliged to talk about end-of-life wishes and try to find a way to help his patient with such a wish. A patient cannot claim or expect euthanasia from his physician; it is a request, without legal binding consequences.8 But we argue that the legal obligation to inform the patient about his prospects can include the obligation to inform the patient about his prospects and options at the end of life.
From a professional point of view, Dutch guidelines state that a physician should act in the best interests of the patient, although sometimes the clinician's integrity can be in conflict with patient autonomy.9 ,10 The Royal Dutch Medical Association (KNMG) wrote a paper on the professional role of the physician, advising physicians to initiate the conversation about end-of-life wishes at an early stage.11 The KNMG stated that a physician should consider talking about this as part of his professional responsibility. From the present study one can conclude that the respondents are aware of the fact that it is important to talk about the patient's wishes, but that actually initiating the conversation remains difficult, despite KNMG guidelines.
We argue that it is not only a legal and professional responsibility but there is also a (moral) obligation to talk about end-of-life wishes.
HD patients ask questions about their prospects (including the end of life). They receive a professional response from their physician. Within a physician–patient relationship professionalism will be partly fed by moral considerations. And moral considerations will become dominant outwith the professional domain. In a physician–patient relationship a physician also is a fellow human being and not just a professional. Helping your patient and having a relationship, especially in the context of HD, means it is a matter of course to face the end of life. Informing the patient about his prospects can be extended to informing about the options at the end of life, especially when respondents recognise that talking about end-of-life wishes can improve quality of life and that euthanasia or PAS is an option a patient should be aware of. In our opinion talking about quality of life and retaining that quality until the end of life leads to talking about quality of dying. If the physician does not consider talking about end-of-life wishes or euthanasia as part of his job, he may have quite a strict opinion about a physician's professional task without taking moral considerations into consideration.
If a physician is unable to reconcile euthanasia with his conscience, a referral to another physician could be a way of taking the professional and moral responsibility and acting in the best interest of the patient. In a society where information concerning euthanasia is widely available we suggest that a physician, although not bound to reach the desired point but advised to refer when necessary, should consider it his job to talk about options at the end of life. Nevertheless, it is clear that a patient with such a request sometimes has difficulty finding a physician.3 ,8 ,12 ,13 Thus, even when the law only affirms the physician's obligation to inform about the prospects of the disease, and recognises the conflict of duties, we argue that a physician could have a moral obligation to re-evaluate his opinion about euthanasia or PAS and his response to patients asking for it.
Although legal and professional guidelines and regulations limit the role of other healthcare professionals in this area they can be very important for a patient. Caregivers, such as nurses, may be in closer contact with the patient than the physician. The team can fulfil an important role in signalling and interpreting the wishes of the patient and sometimes a team member is the first person to whom a patient expresses his wishes. Also other healthcare professionals may be the first to signal and communicate this to the physician.
The conversation between patient and physician about end-of-life wishes can result in an advance directive. Especially in neurodegenerative diseases such as HD, it is advisable to describe, determine and record the wishes, and the KNMG in fact advises physicians to enter into a conversation when a patient produces an advance directive and not just file the document.11 The wishes can be documented by the patient himself or by the physician after a conversation and should be attached to the medical record. From the response concerning the applicability of advance directives it is possible to suggest that some physicians seem to lack knowledge, especially regarding the applicability of advance directives and euthanasia in dementia. Some physicians see the advance directive only as a helpful document, as also reported in earlier research.1 ,3 ,12 Although the law provides a possibility to act, based solely on an advance directive, several reasons have been identified in literature why physicians seldom do. Reasons are for example a difficulty determining the unbearableness of the suffering and the absence of a (present) wish of the person involved. We add a possible lack of knowledge to these reasons: not only a lack of knowledge on the possibility provided for in the law, but on how to fulfil the six requirements of the law on euthanasia and replace the request by an advance directive, and how to handle cognitive decline, response shift and psychiatric symptoms.
Letter of intent on behalf of the physician
In order to enhance involvement and awareness of the possibilities provided for within the law, we propose a letter of intent on behalf of the physician. A suggestion to or obligation for the physician to draw up a document himself might result in a more active participation of the physician. General objections have been discussed and overcome and the physician is committed to make an effort to follow the patient's wishes. The physician is still able to return to this subject, but only on the basis of specific circumstances and not general objections.
This incentive could be stated in a letter of intent for the physician: a letter in which the patient and the physician agree upon a commitment of best intents (table 2). Of course there is never a duty to achieve a given result, but if a commitment of best intents is written down and agreed upon it is impossible for a physician to ignore the subject at a later stage. This is also the moment when the physician can explore the morals, values and wishes of the patient and when the patient can be educated on the subject, about the restrictions and requirements of the law, about what to expect from his physician and how to keep the advance directive up to date. Physician and patient can have a conversation about response shift and how to handle it. They can make arrangements on how often they will discuss the advance directive.
When exploring the wishes and values of the patient, a physician will also talk about the subject of suffering, one of the requirements of the law8 (Penal Code art. 293 and Law on Review of Euthanasia and PAS). The concept of suffering is divided into two elements: unbearable suffering, which is a subjective opinion and which must be understandable `objectively` for a physician, and a lack of prospect of improvement.8 The lack of prospect of improvement is defined as the absence of acceptable treatment possibilities, the disease cannot be cured and symptoms cannot be relieved.8
The euthanasia law in The Netherlands is based (morally) on the principle of beneficence and (in terms of criminal law) the necessity defence. When a patient does not ask for euthanasia, euthanasia is not allowed and subject to a murder charge. Physician integrity combined with the requirements of the law prevents euthanasia in cases of ‘tired of living’.8 When we look at HD, where all criteria for euthanasia can be met, it is the physician who eventually has to decide if the suffering is unbearable to such an extent that euthanasia is justified. The recurrence of conversation about the wishes of the patient, including his view on quality of life, can take the physician along the way towards a desired end of life. The physician can signal a possible response shift. The professional integrity of the physician partly determines the scope of applicability of end-of-life wishes.14 By discussing and describing what is acceptable, the physician's frame of mind can partly be influenced, without the loss of professional integrity.
Euthanasia and PAS are still matters subject to extensive discussion in The Netherlands. According to the physicians interviewed, euthanasia is an option patients should have when suffering from a neurodegenerative disease such as HD. Despite the fact that the respondents provide arguments for initiating a conversation about the options a patient has, most physicians do not take this step. In this article we suggest that there can be a legal, professional and moral obligation for a physician to talk about the subject, especially in the case of neurodegenerative diseases such as HD. The physician should be aware of the fact that although euthanasia is not a normal medical treatment, it is part of the physician’s obligation to educate the patient about the disease and the prospects and it may be the physician’s responsibility to educate the patient about the possibilities of choosing the end of life. This obligation can be seen as a commitment of best intents, laid down in a letter of intent by the physician.
We suggest further research to be carried out into the wishes of patients, not only to improve treatment, but also to explore the expectations they have of their physician. We also suggest physicians be better educated about end-of-life wishes and the possibilities provided for in the law, thus assisting them in improving the way they help their patients to deal and cope with a devastating disease such as HD as well as other neurodegenerative diseases.
We thank all physicians for their participation in this study.
Contributors All contributors had access to all the data and take responsibility for the integrity of the data and the accuracy of the data analysis.
Competing interests None.
Ethics approval Medical Ethics Committee of the LUMC under protocol number P11-035.
Provenance and peer review Not commissioned; externally peer reviewed.