One of the special sessions at the EFNS Congress in Stockholm was devoted to ‘Critical illness and end-of-life considerations’, and held on 11 September 2012.
The session was announced in the Programme book:
There is an interface between law and medicine if end-of-life issues are considered. Neurologists are inevitably faced with the patient’s or family’s preferences in case of a prolonged coma or a persistent vegetative state or if the patient is suffering from neurodegenerative disorders like amyotrophic lateral sclerosis or Huntington’s disease. Evidence from a range of sources demonstrates that end-of-life care practices and preferences vary across countries. Culture is consistently given as a reason for that, but medico-legal, ethical and sometimes also political aspects may play a role.
During this session all these issues will be addressed in presentations from various countries in Europe.
Chair: Marianne de Visser, Consultant in neurology, Academic Medical Centre, Amsterdam, The Netherlands
Three eminent speakers from three different European countries were invited.
1. The role of palliative care in the management of patients with various neurological disorders – David Oliver, Consultant in Palliative Medicine, Wisdom Hospice, Rochester and Honorary Reader, University of Kent, United Kingdom
2. Decision making at the end of life – Ralf Jox, Consultant in neurology, Institute of Ethics, History and Theory of Medicine & University of Munich, Germany
3. Trends and determinants of end-of-life practices in ALS – Jan Veldink, Consultant in neurology, Rudolf Magnus Institute, University Medical Centre, Utrecht, The Netherlands
Dr David Oliver’s main message was that palliative care provides holistic care for patients and their families, aiming to help with the issues they face. Neurological patients who suffer from progressive and disabling disease for which there is no curative treatment can be helped by this approach as they may have many issues which require a careful multidisciplinary assessment and management:
• Physical symptoms such as pain, dysphagia and dyspnoea
• Psychological issues such as coping with multiple loss and the fears of the disease progression
• Social such as the role changes and fears within the family
• Spiritual, including concerns about the meaning of illness and life
Triggers are being developed to help identify the timing and involvement of palliative and end of life care – including the request of patient or family, dysphagia, cognitive decline, dyspnoea, repeated infections, weight loss and marked decline in condition.
Unfortunately, there is little evidence available on palliative care in neurological disorders, ALS, MS and Parkinson’s disease being exceptions. As closer collaboration between neurological services, rehabilitation, primary care and palliative care services develops there is the opportunity to improve the quality of life of patients with neurological disease and families. Currently, a Taskforce is developing a guideline on Palliative care in neurology focusing on the following issues: early integration; multidisciplinary care; communication; symptom management; end of life care; carer support, and education.
According to Dr Jox neurologists often face difficult end-of-life decisions. Many of our patients, however, are unable to make treatment decisions themselves and need surrogates who decide on their behalf. In navigating through the complex decisions about whether to administer life-sustaining treatment, we should keep in the mind the two ethical criteria of patient wellbeing and patient autonomy. Dr Jox presented a decision-making model that combines these criteria and tries to be a practical tool for clinicians, making end-of-life decisions more ethically appropriate, transparent and socially acceptable.
Advance care planning should include:
• Structured, longitudinal process of communication
• Tailored to the elderly, chronically ill, risk groups and their family members
• Counseling by social workers, nurses, physicians, oriented at treatment goals and patient preferences
• Documentation: Personal values, advance directive, appointing a surrogate, emergency plans
• Information of general practitioner, local hospital, nursing home, emergency service, and
• Health care ethics consultation encompassing a set of services provided by an individual or a group to help patients, families, surrogates, health care providers, or other involved parties address uncertainty or conflict regarding value-laden concerns that emerge in health care, which can also be applied in rehab centres, nursing homes, home care, and can improve decision making by identifying ethical concerns, facilitating consensus, sharing responsibility.
The last speaker, Dr Veldink, touched upon a sensitive issue. In The Netherlands, approximately 20% of the ALS patients die due to euthanasia or physician assisted suicide/death (EAS). This rate was similar in three studies performed in the UMC Utrecht between 1994-1998, 2000-2005 and 2003-2008. The stability of the EAS rate is interesting, as according to the literatur a gradual increase in the EAS rate after its legalization (“slippery slope”) is to be expected. However, after legalization of EAS in the Netherlands in 2002, the overall EAS rate, which in majority concerns cancer patients, showed a decrease between 2001 and 2005 in contrast to ALS patients where the rate was stable. A possible explanation might be that many ALS symptoms that become unbearable to patients are still untreatable, e.g their fear of choking to death. Dr Veldink and his group have also shown that, in ALS patients, psychosocial symptoms are more often the reason to request EAS than in cancer or heart failure patients. As psychosocial symptoms cannot always be prevented, patients should be helped to cope with them at the earliest possible stage.
A national Dutch study shows that continuous deep sedation (CDS) may be used as a substitution for EAS. In ALS patients approximately 10-15% die during CDS. Dr Veldink and his group have shown that only half of these patients had at some time expressed a wish to hasten their death. And only 10% of the patients who explicitly requested for EAS eventually died during CDS. Further, CDS appears to have other determinants than EAS. These results indicate that is unlikely that in ALS patient CDS is used as a substitute for EAS.
He concluded that a prospective study is needed to investigate the patients’ , caregivers’ and doctors’ preferences about hastened death.
The session was well attended and from the numerous questions it was clear that the speakers had given food for thought.
Marianne de Visser is Professor of Neurology at the Academic Medical Centre in Amsterdam, The Netherlands and Vice President of the EFNS.
