Towards the end

Palliative care is about relieving a dying person of the symptoms that give them pain, allowing them to have the best quality of life possible. It is about helping the person live until their death – it is about maintaining their dignity until the end.

Palliative care is not about curing a dying person of the condition that will lead to their death. For family/whānau and those who care for people with dementia, palliative care also concentrates on giving emotional and practical support before and through the death of the person.

Palliative care for people with dementia comes into play when both the person with dementia and their family/whānau have together looked at all options of treatment and management for their illness. It’s when they realise the main thing they can do now is keep the person comfortable until the end.

Knowing what the person with dementia wanted at this time is very important because their family/whānau can use their wishes to decide what to do when the person can’t speak for themselves anymore. This is where an advance care plan and enduring power of attorney are very helpful.

Palliative care is about making sure the person in the final stages of dementia is kept as physically and emotionally as comfortable as possible. Everyone involved in decisionmaking processes needs to be flexible, sensitive and realistic as at this stage there is only so much that any intervention can do.

There are many areas in particular that those involved in caring for the person with dementia needs to give careful thought and attention to so everyone knows what to do:

• positioning the person in their bed or chair to be as comfortable as possible
• mouth (teeth, gum and tongue) care
• any difficulties in breathing easily
• skin care
• bladder and bowel care
• moving the person from bed to chair, chair to bed, etc.
• emotional support for fear or upset.

If the measures to be taken in these areas, and any others needing consideration, are agreed to ahead of time, the person can be made comfortable more swiftly as everyone knows what to do.

How symptoms are managed will depend on the stage of the dementia and any other conditions the person with dementia may have.

These symptoms will differ from person to person, as everyone is different. Symptoms may also differ because of other medical conditions a person with dementia may have.

Even if some symptoms can be treated in people with end stage dementia, some tough decisions may need to be made. With palliative care, the questions need to be asked: How useful will the treatment be? Will the treatment cause another problem? What choice will best make the person comfortable and preserve their dignity? The hard truth is that sometimes treatment for symptoms does more bad than good.

It’s hard to know when someone with dementia is in pain, and there’s strong evidence to show that pain in people with dementia is often unrecognised because they can’t talk about it.

Therefore it’s important that everyone involved with their care takes an ongoing and systematic approach to recording, assessing and managing any pain they recognise. A health professional can tell you how to do this.

Towards the end, many people with dementia lose the desire to eat and drink, or they have difficulties eating and swallowing. This is a normal part of the condition’s progression and is often a key indicator that the person is moving towards the end of their life.

When people who are dying are dehydrated, their pulmonary secretions (phlegm in their lungs) decrease so there’s less coughing, and there may also be less incontinence.

Dehydration can make them seem peaceful. It can be hard to work out what to do if a person with dementia has problems with eating and drinking, especially if artificial nutrition and hydration are raised as treatment options. This may seem like the obvious thing to do, but there’s no evidence to show artificial hydration (additional fluids) or nutrition prolongs a person with dementia’s life, makes them comfortable nor leads to a more peaceful death.

Deciding to prescribe antibiotics or not must be made on each individual case, as it’s very difficult to give a definite answer on the benefits of prescribing antibiotics to someone who is dying.

Certainly giving intravenous antibiotics (via a drip) near the end of life means the person must be admitted to hospital, which can in itself cause unnecessary distress. If they can take oral antibiotics some symptoms might be relieved, but a decision will have to be made to stop them if they aren’t affective or are making the person uncomfortable in other ways.

Palliative care includes attending to the spiritual needs of the person with dementia, their family/whānau and those caring for them.

While that can mean spirituality through the rituals and practices of religion, it can also mean many different things to different people. For example a sense of spirituality and well-being might be gained through being able to see outside into a garden.

The person’s advanced care plan should contain information on what helps the person to feel spiritually at ease. Family/whānau members and those with a caring role should feel free to ask staff providing the palliative care to ensure whatever spiritual practices the person with dementia felt were important to them can continue.