This paper has explored the ethical decisions which doctors face for advanced cancer patients with VTE, at the end of life. Whether an action could be considered “appropriate” for this group of patients was a major part of doctors’ decision making strategies. However, defining what is appropriate and what is not seems to be intrinsically related to the individual viewpoints of different doctors, which can be demonstrated by the divergent viewpoints which were held for the same issue. This can clearly be seen when participants discussed the dilemma as to whether dying of a PE is considered a good or bad way to die with contradicting personal opinions of two doctors, both at consultant level, with the same need to maximise quality of life in a short time frame used to support their opposite conclusions. Inherent in the views of those opposed to LMWH for patients at the end of life may be an implicit paternalism given that patient choice is more firmly aligned with the viewpoint of offering LMWH in order to prevent or control the symptoms of a fatal PE. This has direct implications for patient care as two similar patients seen by different doctors may be subject to polarised clinical opinions on administering LMWH, which potentially entails consequences for patient choice and autonomy, controlling symptoms and also life expectancy.
The majority of doctor’s decision making strategies are guided by individual patient context and can be placed on a shifting continuum that pays attention to the complex benefits and burdens of giving treatment for patients near the end of life. General Medical Council guidelines on treatment towards the end of life state:
"…It may be of no overall benefit to provide potentially life-prolonging but burdensome treatment in the last days of a patient’s life when the focus of care is changing from active treatment to managing the patient’s symptoms and keeping them comfortable "
But this obfuscates the fact that LMWH for some patients may be partly or wholly for the purposes of symptom management. This was most often the case to prevent severe breathlessness becoming worse by preventing further PE, thus allowing the symptom to settle. But it was coupled with the burden that an immediate return – within hours - may not be seen with daily injections. This represents an ethical dilemma in itself and it is here where we can see the tension between the principles of beneficence (do good) and non-maleficence (minimise harm). Some doctors may lean towards beneficence upon witnessing patients becoming breathless. However, there is anecdotal concern that a LMWH injection is too invasive and distressing for patients with advanced cancer, both due to the pain of the injection and also the subsequent bruising, especially in the last few days of life. This may sway some doctors towards the principle of non-maleficence based on the potential distress of a subcutaneous injection. However, in a study which looked at treatment injections, a daily LMWH injection was found to be acceptable to patients with advanced cancer . Given this evidence, it could be argued that clinicians who withhold LMWH injections because they do not want to submit the patient to the perceived discomfort of the physical act of the injection are making a moral decision which may run contrary to that of the patient’s own choice. However, this argument has to be put into context of clinicians witnessing patients in distressing circumstances and compassionately not wanting to inflict additional burden on their patient when the immediate cessation of symptoms may not happen and the patient is imminently dying.
Many of the doctors interviewed for this study stated that their medical decision making generally would depend on patients’ wishes but as the empirical qualitative data shows, doctors did not discuss this in any detail with regard to the central theme of this paper; starting or stopping LMWH injections. It may appear incongruous that physicians would not talk about involving patients and their families in the decision making process for LMWH injections. However, it is clear that in this research this topic was not explicitly discussed by the doctors interviewed. This is not to state that doctors believe involving patients or families is unimportant or irrelevant but that the research team found no evidence either way to support or refute this notion.
The main limitation of this study is concerned with how representative the sample of self selecting doctors interviewed can ever be in a specialist area. Participants who agreed to an in depth interview may have been those who had a particular interest in advanced cancer patients and VTE – this may have been especially true of palliative medicine doctors and oncologists who see these patients on a frequent basis. Potential participants may have opted not to take part in the research if they felt their level of knowledge about cancer and VTE was not significant and that they may have incurred embarrassment as a result of this. This is a general problem in some areas of qualitative health research - and not specific as such - to our area of interest, but many of the participants were familiar with the principal investigators of the project via their clinical work.
The term "end of life" was deliberately not concretely defined during the interviews to allow for doctors to discuss their own decision making with reference to patients on this spectrum of advanced disease. We believe this approach has borne rich data about the ambiguity in clinical decision making for this patient group and we did not use a formal measure of performance status as that is not usual routine clinical practice in the UK across all settings.
There is little formal guidance or literature to help these clinicians with difficult decisions in the treatment of VTE for this group of patients. Whereas guidance on pain, agitation, nausea & vomiting, cardiopulmonary resuscitation, hydration & nutrition, ventilation and sedation at the end of life is available , no formal management guidelines exist for VTE specific to patients with advanced progressive cancer although Noble et al. have made recommendations based on the literature applied, where possible, to the palliative care population . Although there is a large body of literature about end of life decision making, regarding a range of medical, consent and capacity issues, little has been written about the ethical decisions which doctors make regarding VTE in advanced cancer patients. No standardised practice or formal guidance is available to help doctors make these challenging and complicated decisions which is perhaps unsurprising given the highly individualistic and contextual nature of VTE treatment at the end of life.