Internationally, practice is not uniform but there is a widespread interest and increasing understanding of the need to develop a good evidence base and improved palliative care for people with advanced dementia^7,9,10. Although in the USA, people with advanced dementia do not need to have another serious illness to qualify for hospice care⁷, access of people with advanced dementia to palliative care services is limited both in Europe and in the USA¹¹. In the UK, despite the willingness to see non-cancer patients, people with dementia in acute hospitals are only a third as likely to be referred to palliative care as other patients¹², and few are admitted to inpatient hospices¹³. A recent US study has highlighted the low referral rate to palliative care services (22%) and high occurrence of burdensome interventions in people with advanced dementia (40.7% in their last three months of life)⁸.

In Germany there is concern about the lack of clear clinical and ethical guidance for decision making in advanced dementia, including the appropriateness of using tube feeding¹⁴. In France there is increasing interest in developing adequate specific services which follow a palliative care model and a few studies are underway⁹. In some countries (e.g. USA, Germany) it is much commoner to use artificial nutrition and hydration in those dying with dementia¹⁵. The insertion of PEG tubes (as well as the use of mittens and restraints which are sometimes needed to enable this practice) may be seen as preserving life or, by some, as a burdensome medical intervention which may not be appropriate. UK practice is quite firmly against such methods¹⁶. But conversely, there is substantial concern in the UK about the underuse of hydration in those who are dying and there are clear reports of a harrowing death occurring without the use of any fluids¹⁷. We suspect that there is a need for balance here. European continental practice does include more use of parenteral fluids when these are well tolerated by the patient⁹.

In other jurisdictions, where euthanasia is legal (e.g. Holland, Belgium, Switzerland, Oregon), euthanasia can also be applied without consent to people with dementia who lack capacity to decide for themselves. But many worry that the availability of euthanasia may make good palliative care less important, and training of lower quality¹⁸. Deep sedation has been seen as an alternative to euthanasia in Holland¹⁹. Concern has also been expressed in the UK about the use of some care pathways for those who are dying²⁰. Perhaps the biggest worry is that if a diagnosis of dying is made in someone who is not actually imminently dying, the care consequent upon that diagnosis (such as administration of inappropriate sedatives and withdrawal of fluids) may sometimes assure a death that was not imminent. But in the end whichever the jurisdiction there is a very clear need for good and appropriate care for those who are dying. It is entirely unacceptable that those who are dying might not have access to good palliative care in whichever jurisdiction they live. After all, palliative care exists to help people live as well as they can until they die and that must, surely, be available to all.

1. Perhaps the greatest aim of good care of the dying is to enable people to live as well as possible until they die. Frail and demented elderly often contribute in many ways to their family and others during their last illness and many people with dementia live well.

2. When patients with dementia or other terminal illnesses are distressed, then that distress ought to be alleviated.

3. Discussion about dying, with a willingness to inform both patients and carers, is important. Discussions enable advance illness planning which can be of great help later on in enabling those with dementia to live as well as possible and also to die well. Last-minute trips to hospital via A&E are to be avoided, and this will most likely be through good discussion and planning.

4. Care of the dying should seek to ensure that treatments given are effective, appropriate and not burdensome, primarily focused on enabling the patient to live well until they die and to reduce suffering.

Upon its founding, the hospice movement saw symptom control and the alleviation of distress as priorities. Hospices moored this alongside high-quality care and good environments providing oases of quality that were originally mainly afforded to those dying with cancer.

Dame Cicely Saunders, who founded the hospice movement, identified the reality of ‘total pain’:

• Pain is not just physical, but mental and existential too. All forms of pain/distress must be addressed and treated. It should be said here that the notion that pain (distress) can be both mental and physical is hardly alien to dementia care. Such an understanding has always been a central part of old-age psychiatric care.
  
• She saw that the patient is a whole person, an interplay of physical, psychological, social and spiritual dimensions. These all have an effect in a single individual and interplay together. So doctors must recognize and respond to psychosocial and spiritual distress, and not just deal with physical disease.
  
• She saw that the family was the unit of care and that care had to become centred around the person by recognizing the broader family and community.
  
• She established that symptoms could be analysed scientifically in the same way as any other illness so as to enable best care²¹.

The models of palliative care bring with them some useful ethical views. It has long been accepted that sometimes the importance of distress reduction may mean that side effects of treatment might shorten life (double effect). A comfortable death can often be achieved by the appropriate use of medicines, and this may be one reason (see below) why antipsychotics may be justified. The oft-quoted ethics of ‘first do no harm’ may work a little less well. If the only aim is to avoid harmful treatments, it may not be possible to adequately alleviate distress. The Hippocratic position of ‘I will never intend harm’ would apply better as all treatment may bring a risk of harm but the intention must always be to improve the patient’s condition. So, in the end, the purpose of care is central. If in the care of the dying the primary purpose of care may well be to reduce suffering, while accepting some risk of harm, that is fine. But if the primary purpose is to shorten life, then of course that is not.

The other key concept here is burden of care. When we are mentally well we will accept burdensome treatments so as to become well again, but as frailty increases and death nears, it becomes increasingly wrong to apply burdensome treatments. This helps to define appropriate and inappropriate care.