Withdrawing from dialysis: An End-of-Life Decision – Some legal and ethical considerations
Sarah Dorrington MBCHB and Yogita Aggarwal MRCP
A chronic dialysis patient in her late 70s presented to her renal unit with a history of nausea, vomiting and general failure to thrive. Over the last 8 months the patient had lost more than 10% of her body weight and now had a BMI of 16. She had also become weaker and had moved from her own home with carers visiting four times a day to a nursing home. Her mobility had also deteriorated and she used a wheelchair most of the time. She remained cognitively intact but physically required help with activities of daily living and personal hygiene. She was not depressed.
The patient received haemodialysis via a tunnelled line three times a week and had multiple failed arteriovenous fistulae. She also had a background of end stage renal failure secondary to acute severe pyelonephritis, ischaemic heart disease, severe left ventricular diastolic and systolic dysfunction, type two diabetes mellitus, and a permanent pacemaker.
Initial investigations were unremarkable, with bloods tests within normal range for a patient on haemodialysis. During the course of her inpatient stay the patient was scheduled for an upper GI endoscopy and an abdominal CT – but both were abandoned on numerous occasions as the patient had felt too weak to proceed. The patient’s symptoms were managed with subcutaneous anti-emetics, and she elected not to have further investigations for her weight loss and nausea.
During her stay the patient had considered withdrawal from dialysis treatment, and had previously discussed this with her community dialysis physician on a few occasions. However the patient had voiced concerns about her family coping with her death and, despite discussions between the renal physicians and the patient’s family, the patient had decided to continue with dialysis. She had also decided on a do not resuscitate order.
Towards her impending discharge home, her haemodialysis catheter had become problematic with poor flows. The line did not improve with Urokinase. The patient was scheduled for a tunnelled line replacement. Her volume and electrolyte status meant that temporary access for dialysis was not imminently required.
Overnight, the patient rapidly deteriorated and became clinically septic. She became very drowsy and only groaned in response to some commands. She had radiological evidence of a right basal pneumonic process. The patient’s clinical demise meant that she was unable to tolerate further dialysis line insertions, or haemodialysis sessions. The patient no longer demonstrated that she had decision-making capacity.
A discussion with the patient’s family ensued regarding the cause of the patient’s rapid deterioration, a ceiling of medical care, the initiation of end-of-life palliative care and the imminent eventuality of her death. It was explained that whilst the provision of dialysis and even more invasive treatments would certainly prolong her life, it would not add to her quality of life or imporve her clinical state. The family were in agreement.
No further attempts at providing haemodialysis lines were made, dialysis treatment was withdrawn and the patient was commenced on the supportive care pathway, with provision of clinical care focused on symptom control and comfort measures. She passed away in hospital 7 days later.
The Discussion: Consideration of the relevant end-of-life legal and ethical principles
UK law requires that doctors must act with respect for the principle of the sanctity of human life. This principle is not absolute. When making decisions concerning life-sustaining treatment there needs to be a presumption in favour of prolonging life, however this is not an absolute obligation if prolonging life has negative consequences for the patient.
Patients who retain relevant decision-making capacity are able to refuse life-prolonging treatment. Treatment against their competent wishes, i.e. without their consent, not only attracts a criminal and civil charge, but also violates a key ethical principle of medical practice - patient autonomy.
When patients lack relevant decision-making capacity, the withdrawal of life-sustaining treatment can occur if the treatment is no longer in their best interests. Decisions should, where possible take account of the patient's wishes or desires that may have been expressed before they lost decision-making capacity. Collateral information can be gathered from family, friends, and community practitioners, and should be an adjunct to the decision-making process.
The intentional killing of a patient by a doctor can be unlawful, or murderous, if there is a breach of the duty of care to treat. This duty of care is not breached when withdrawing life-sustaining treatment that is no longer in the best interests of the patient. If treatment is not in the best interests of the patient, then the physician does not have a legal duty of care to provide it.
Euthanasia is the killing of a person in their best interests. Active euthanasia is where a person ACTS to end the life of a person in their best interests, and passive euthanasia occurs when a person OMITS/WITHHOLDS life-prolonging treatment. In passive euthanasia, death occurs from the underlying process in play, and not from the actions of the person withholding/withdrawing/omitting treatment. Active euthanasia is illegal in the UK.
There are three major ethical principles that underpin the majority of legal end-of-life decision-making.
The Act and Omissions Doctrine: This is based on the premise that human life is of value and should be protected. ACTS to end human life are morally culpable. If human life ends due to an OMISSION, then the person who has failed to act is not culpable or less culpable. The person has died from the disease process already established.
The Doctrine of Double Effect: This is based on the premise that human life is valuable. The ending of human life may be permissible if it is due to the side effect of a good action, where death is foreseen as a potential outcome but is not intended.
The Best Interests Test: Based on a utilitarian-type calculation whereby the sum positive effect of actions must be greater than the sum negative effect of actions, or where the sum effect is when the least harm is caused for an action to be morally permissible. The withdrawal of treatment is justified as it reduces harm to the patient, and respects their wishes.
With relevance to the case presented:
- Passive euthanasia
Whilst there were many contributing factors towards the deterioration and ultimate death of this patient, the direct cause was end stage renal failure. The doctor is “allowing someone else to die” by withdrawal of life-sustaining treatment, in this case dialysis.
Patients may have been established on dialysis for many years, and withdrawing provision of dialysis for these patients will almost certainly bring about their death; this is permissible if the risks and burdens of ongoing dialysis are thought to outweigh the benefits.
- Burden to patient and family, and treatment futility
Whilst this is understandably difficult to quantify, continuing burdensome but life-prolonging treatments to a patient in the last days of life may not always be appropriate. Undergoing haemodialysis treatment is time-consuming, energy demanding, and can be associated with unwelcome symptoms both during and after treatment.
When assessing the burden associated with a treatment, views are often expressed in terms of quality of life (something which can only truly be determined by the patient) and futility (the treatment is active but no longer effective in improving the condition of the patient).
Whilst it is important to consider the family’s wishes, and take their views into account, the patient should remain the centre of consultation and their views should be kept as priority. Whilst one can reasonably assume that patients will allow their care to be discussed with their closest relatives, it is important to remember guidance on confidentiality and always check with the patient they are happy for such discussions to take place.
- Utilisation of end of life pathways
Whilst the Liverpool Care Pathway has come under considerable criticism in the mainstream media of late, it is accepted in medical literature that end of life pathways, when used appropriately, are associated with the provision of best practice end of life care. Such pathways serve as a prompt to ensure all aspects of a patient’s physical, psychological and spiritual needs are met when reaching the end of life.
Key learning points
1. All junior doctors should read the GMC document “Treatment and care towards the end of life: good practice in decision making” as it provides guidance on the areas outlined above and many more complex decision making challenges associated with provision of end of life care.
2. When decisions are made to instigate end of life treatment, appropriate use of local end of life pathways should be encouraged, and help should be sought from the palliative care team as required.
1. Treatment and care towards the end of life: good practice in decision making. GMC Explanatory Guidance – Good Medical Practice 2013.
2. Ministry of Ethics – web based resource teaching medical ethics and law for medical students . Accessed 24/02/14 https://ministryofethics.co.uk/?p=11&q=3
4. Jonstone,R. P. et al, End of Life Care in Wales: evaluation of a care pathway-based implementation strategy, BMJ of Supportive Palliative Care, 2012 (2) 150-155
5. Ashton, S. et al, End of life care for people with dementia: an evaluation of implementation of the GSF and LCP. Palliative medicine 2010, 24(2), pp. 202-202
6. Jackson E. Medical Law : Text, Cases and Materials (Oxford: Oxford University Press, 2013) 3rd edition.
Please also refer to May 2014 Lesson of the Month: End of life care matters. Found at https://renalmed.co.uk/case-studies/may-2014