Palliative care is the active total care of patients whose disease is not responsive to curative treatment. The goal of palliative care is the achievement of the best possible quality of life for patients and their families. (World Health Organisation)1
Palliative care has a dual goal in patients with dementia:
- To focus on relieving the symptoms experienced by the person with terminal dementia, allowing them to die in comfort and with dignity; while also
- Providing emotional and practical support to family and carers before, during and after the death of the person with dementia.
Important to both of these goals is to respect the spiritual and cultural needs of the patient and their family and carers. 1
Planning palliative care
To achieve high quality palliative care for people with terminal dementia it is important that health care professionals work together with the patient and family to explore issues related to treatment and management. Of particular importance is the care environment, as people with severe dementia often have disorientation and confusion and remaining in a familiar environment can reduce this. 2 Another important consideration is advanced planning of both medical and financial issues, which is further explained in the Advanced Care Planning section.
Management of symptoms
Several areas of symptom management during palliative care have been identified by Alzheimer’s Australia as being particularly important. 1
- Pain is reviewed in the section entitled Pain Management.
- Nutrition: There are many issues that can arise in late stage dementia which may affect the person’s ability to be properly nourished and hydrated. In many cases the reduced desire to eat and difficulty eating and swallowing, are simply indicators that the person is nearing death; however other non-dementia causes of eating difficulties should also be ruled out. 1 If feeding causes choking, then it is better to use a soft or pureed diet and provide several small meals per day.
When regular feeding is difficult or impossible, family and carers may wish to use artificial nutrition and hydration or tube feeding. 1 However, there are many adverse effects related to tube feeding and research to date suggests that in most cases it is better not to use this method of feeding in people with terminal dementia. 3 In addition, early evidence actually shows that people with dementia do not survive longer if they are tube fed. 4
- Hydration: It is important to be aware that dehydration is the loss of body fluid and is different to thirst. There are several advantages to dehydration in the terminal stages of dementia. Dehydration can lead to a reduction in the following complaints; coughing caused by pulmonary secretions, shortness of breath, congestion, nausea, vomiting, abdominal pain, and lower urinary output. 5 It can also lead to the production of natural analgesics. 5 These effects of dehydration may lead to a feeling of calm and comfort as death approaches. 1, 6, 7 Adverse effects of dehydration are easily treated, such as a dry mouth which is remedied by appropriate mouth care and sucking ice chips. Also an electrolyte imbalance may occur, which could lead to muscle spasms and altered consciousness that can be treated palliatively with antispasmodics or sedation. 1 Any decision about rehydration should be made in conjunction with the family, after providing them with up to date information on the potential benefits and harm.
- Comfort Management:
Good palliative care takes an active role in finding alternatives to invasive procedures and to maximise comfort of the person that is dying. In particular, the following areas should be dealt with in the least invasive manner to increase comfort of the patient: 1
- Personal hygiene is often better dealt with by avoiding use of a shower or bath, to improve privacy and avoid pain and increased fatigue. Other methods from bed baths to disposable cleansing wipes may be used.
- Mouth care is particularly important in people refusing fluids. Using ice chips, regular sips of water, and cleaning of teeth, along with attention to dry lips will all help.
- Difficulty breathing is common as the patient nears death. Again, this is best dealt with in a non-intrusive manner through use of morphine, respiratory sedatives and medications that reduce excess secretions, rather than oxygen through nasal tubes or suction of the upper airways.
- Skin care during the last days of life should focus more on relieving pain caused by skin breakdown rather than trying to halt it. In addition, use of pressure relieving devices can improve prevention of pressure sores, while also reducing disturbance caused by frequent repositioning.
- Bowel management should be maintained until death, and use of medications which cause diarrhoea or constipation should be regularly reviewed.
- Mobilisation can help reduce pneumonia, contracture and pressure sores, while also improving the person’s sense of wellbeing. Nevertheless, when death approaches it may be that the person is more comfortable in bed and more time should be spent on providing comfort care.
- Personal support through the presence of a family member, carer or trained volunteer can provide comfort to a person who is approaching death.