As a student considering a career in medicine, it is possible you’ve thought about the future clinical situations you would find yourself in. As with all medical professionals, the core motivation is to select the best treatment for the patient and achieve a good outcome. However, ultimately we must all deal with the issues surrounding the end of a patient’s life and it is often not fully recognised that the doctor’s role here is just as vital as in any other element of medicine. This can be an extremely challenging situation to deal with, both medically and emotionally and given the highly sensitive nature of this topic, perhaps the most difficult to navigate.
As life expectancy continues to increase and many patients often suffer from a wide variety of chronic illnesses, death increasingly may involve a decision to limit or perhaps withdrawing care. Such difficult decisions will be an inevitable part of all doctors’ careers and it is useful to start thinking about what is best for patients (and this may be discordant with those of the family) at the time where they perhaps need the most support. Until relatively recently, end of life planning mostly focussed on providing care to terminal cancer patients but owing to the aging demographics, this has undergone significant change. The Department of Health has previously identified end of life care as an area where quality of care provided has been highly variable 1 and in 2008 introduced the National End of Life Care Programme 2 to identify and expand best practice. There is also an increased emphasis on integrating health and social care, a common theme in current long-term NHS thinking.
It is worth noting that the term ‘End of life’ is not entirely consistent across health professionals and end of life care takes a broader approach than that in the similarly sounding terminal care. The GMC defines end of life care as dealing with patients who are likely to die within the next 12 months 3 whereas terminal care refers to that of the last few days of life. However, in other countries such as Australia, end of life care can confusingly refer to the last few days of life.
Given the complex and emotionally charged nature of this topic, it is an issue that frequently arises both in the press and in the legal system, and thus a good working knowledge of the major issues will be useful in an interview looking to assess your understanding and approach in this domain.
Common issues in end of life care
- Advance care planning
Patients dealing with chronic conditions may reach a point in their illness where they are no longer able to make an informed choice about the care they wish to receive. In this case, it is advised to opt for an advance directive. This is an instruction issued by the patient relating to their preferences in regards to their medical care when they can no longer communicate them effectively. This can be in the form of an oral statement to the healthcare provider or family and friends, a written statement or by naming a proxy to act on their behalf. All of these directives are understood to be an extension of the competent patient’s decision making process, but a written directive is preferable as it can be less easily challenged.
A written directive can take the form of a living will (the expression of the patient’s wishes in relation to their own treatment when approaching death), naming a specific person to be a decision-maker for the patient via power of attorney or a terminal care document which names the patients decision-maker and advocate and expresses clear choices regarding specific treatments (such as hydration, nutrition and ventilation)
Difficulties can arise when dealing with proxies who may have to make momentous decisions in relation to the patient’s care. These decisions should be assisted by standards that have both an ethical and a legal basis. Ethically, the two overarching standards for decision-making are that of substituted judgment (i.e. representing the patient based on their previous expressed wishes, desires or beliefs) or best interest (making a decision of care that results in the best quality outcome for the patient). Generally, unless explicitly stated otherwise, proxies should not make decisions based on their own values and desires and as the patient’s doctor, it is important to gently challenge decisions of proxies who ignore advance directives and may be basing decisions on their emotions. Ultimately, the patient’s interests are those which should be paramount in the doctor’s mind and achieving the best outcome while fulfilling their clearly expressed wishes is the key objective when dealing with the end of a patient’s life.
- Do not resuscitate orders
The most common end of life decision is choosing to not be resuscitated and this is enacted when a doctor issues a DNAR (do not attempt resuscitation) order. This instructs medical personnel to not attempt cardio-pulmonary resuscitation when a patients enters cardiac or respiratory arrest. An attempt at CPR has previously been seen as an obligation but over time it has been established that survival rates after CPR are extremely poor for most people with end-stage disease and as such, resuscitation offers little to no benefit to the terminally ill. In many cases, it may even prolong their suffering and now is seen as a therapy that can be withheld at a patients or proxies request.
However, difficulties may arise where patients or proxies insist on life-sustaining interventions that in the doctors opinion may be futile and counterproductive to the patient’s well-being. Studies have demonstrated that many seriously ill patients desire interventions that have a low likelihood of success and ultimately spend their last days in an undesirable state (e.g. on intensive care, receiving mechanical ventilation or unconscious). This can often take the form of the following difficult situations:
- Family insistence that everything be done – In this situation it is advisable that the doctors should clarify what is meant by everything. Many patients or proxies may not want literally everything done if the potential for suffering and harm is clearly explained. It is also useful to understand the values and concerns behind such requests – where some patients or surrogates might be concerned that if they do not insist on an intervention, beneficial treatments will be withheld.
- Religion-based decision making – Beliefs about religion may lead to an insistence on intervention. Patients may believe in a miraculous recovery if their faith is strong enough and they maintain treatment or that life is a good in itself, regardless of its quality, and that it must be preserved until god decides to end it. It is critically important to be respectful of these beliefs as they can reflect a person’s core values and identity and patients must find out enough information about their belief to understand their impact on specific clinical decisions.
- Request for interventions that cause the patient suffering – Family members may request interventions based on an emotional response or based on belief around suffering and spirituality. Nevertheless, the principle of non-maleficence must apply (do no harm) and this allows medical professionals to refrain from interventions that may cause significant suffering and prolong the patient’s life briefly. Again it is important to understand the thoughts and beliefs underlying such a request in order to address them thoroughly
It is important to remember that as a doctor, you must be honest and communicate all elements of the process with the proxy, as well as understanding their perspective. In such situations, communication can be as critically important as the medical component of the end of life process.
- Assisted dying/euthanasia
This is perhaps one of those most important legal issues going before the courts at the time of writing and may be an area that undergoes significant change in the near future. There has been considerable public debate in recent years about whether people suffering from incurable diseases wishing to die can legally be assisted by relative or friend. Under English law, it is legal for individual to end their own life but under the Suicide Act 1961, it is an offence to aid, abet, council or procure the suicide of another. This has been amended by Coroners and Justices Act 2009, so that person can be prosecuted for committing ‘acts capable of encouraging or assisting the suicide or attempted suicide of another person.’
There have been a series of challenges to change the law attempting to change it so that assisting the person to die will not lead to criminal prosecution. In England, the Director of Public Prosecutions (DPP) has discretion to decide whether and when prosecution of such cases is in the public interest.
The most recent high profile case is Nicklinson v Ministry of Justice which came before the UK Supreme Court in 2014 4. Mr Nicklinson suffered locked-in syndrome, a non-life threatening condition but wished to die (but needed help of a Doctor to do so). He could not request that assistance while doctor likely to face a charge of murder or assisted suicide. They argued that the DPP’s ‘Policy for prosecutors in respect of cases of encouraging or assisting suicide’ is an unjustified interference with his rights under the European Convention on Human Rights.
The UKSC ruled in June 2014 by that they did not have jurisdiction to change law on assisted suicide and held that the DPP’s guidance was lawful. This issue has now been raised in parliament and so the relationship between the doctor and end of life care may be subject to significant change in the upcoming years, perhaps even during your time at medical school.
Nevertheless, medical professionals can provide high doses of pain relief medication to treat severe pain in end of life care while being aware that its high dosage level may also result in unconsciousness and hasten death. This seemingly contradictory notion operates via the principle of double effect whereby the planned action must have a good and bad effect, with only the good effect desired. The bad effect cannot be the means to the good effect and the good effect must outweigh the bad effect. Furthermore, therapy can be withheld (such as nutrition and hydration) and there is no difference between that and withdrawing therapy.
This has led to some particularly negative media coverage, particularly with the now retired Liverpool Care Pathway. This was developed in the late 1990s to care for terminally ill patients with the aim of assisting a multi-disciplinary team to discontinue non-essential treatment and instead provide comfort measures during the last days. However, there were several recorded cases of patients being put on to the LCP without informing or consulting the patient or family and this caused great distress upon discovery. The Medical Ethics Alliance have particularly been heavily critical, arguing that in the elderly, natural death is painless and the withdrawal of fluids while depriving patients of consciousness was not proven to be safe, effective or even necessary. Since 2013, the LCP has been phased out and the following 5 priorities are now outlined in end of life care (with a particular focus on communication) by the Leadership Alliance for the Care of Dying People 5:
- The possibility that a person may die is within the next few days or hours is recognised and communicated clearly, decisions made and actions are taken in accordance with the person’s needs and wishes, and are regularly reviewed and revised accordingly
- Sensitive communication takes place between staff and the dying person, and those identified as important to them
- The dying person, and those important to them, are involved in decisions about treatment and care to the extent that the dying person wants
- The needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible
- An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agree, co-ordinated and delivered with compassion
The experiences with the LCP have made it clear that communication around the diagnosis of dying has a clear impact on the death experience of the patient, family and nurses caring for them. It is this communication that is vital for the patient and family to feel that they are supported and cared for during an extremely difficult time. If done well, communication can facilitate a ‘good’ death regardless of the setting.
This issue can often be highly difficult due to the emotional forces at play. It requires the health care professional to manage the range of clinical, emotional, social and spiritual issues that arise in the dying process and address a number of ethical decisions. Despite this, it has often been the ultimate goal to achieve what has been described as a ‘good’ death for patients. This has been defined many ways but the key goals in any death must be:
- Clear communication around the disease process
- Good symptom management
- Support for the patient and family members
- Having people important to the patient close by in familiar surroundings, while being treated as an individual with respect and dignity
1 NHS National End of Life Care Programme, official website (accessed 29/08/15 at http://webarchive.nationalarchives.gov.uk/20130718121128/http:/endoflifecare.nhs.uk)
2 End of Life Care Strategy: Promoting high quality care for all adults at the end of life, UK Department of Health, July 2008 (accessed 29/08/15 at https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/136443/EOLC_exec_summ.pdf)
3 Treatment and care towards the end of life: good practice in decision making, GMC, September 2014 (accessed 29/08/15 at http://www.gmc-uk.org/static/documents/content/Treatment_and_care_towards_the_end_of_life_-English_0914.pdf)
4 R (on the application of Nicklinson and another) (Appellants) v Ministry of Justice (Respondent) 2014 UKSC 38
5 One Chance to Get it Right, Leadership Alliance for the Care of Dying People , June 2014 (accessed 29/08/15 at https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/323188/One_chance_to_get_itright.pdf)