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This is an edited version of a presentation given to the 2018 Wicking Trust Symposium held in conjunction with Equity Trustees in Melbourne on 9 October 2018.

The beginning of the Royal Commission into Aged Care Quality and Safety is a timely reminder to focus on what makes quality aged care – particularly the role of palliative care in the care of people with dementia near the end of life.

My primary message is this. When caring for someone, we must find out who they are.

That is far more important than what is wrong with them.

This means looking at the physical, psychological and social and spiritual needs of patients and families and how they can be met.

We need to know what is working well and what can be improved.

I have been doing palliative care for over 30 years and dementia has only in recent years become recognised as a terminal illness.

Increasing numbers of people will die with dementia.

Currently almost 50 million people worldwide have dementia, and that figure is predicted to double by 2030. New Zealand figures show there are now more people with evidence of dementia (27.8%) than evidence of cancer as the cause of death.

Palliative care aims to improve quality of life for people with dementia. But it is challenging to find out what quality of life for each person might be.

Pain is probably one of the easiest symptoms to alleviate for people at end of life, though it is the one that everyone worries about. Other symptoms can be just as, if not more overwhelming. These can include fatigue, nausea, breathlessness and constipation.

We can’t necessarily “fix” all the issues people bring to dying; but we can try to make them less troublesome. For example, we can’t “take away” some spiritual suffering because it is difficult to know how that may present for each patient. It may be related to not living long enough to see grandchildren grow up and achieve their full potential. There is nothing you can do about that except listen and understand the impact this may have.

But the aim of palliative care is to identify those issues that matter early on so that we can optimise the way that we manage things.

Palliative care:
1. Provides relief from pain and other distressing symptoms
2. Affirms life and regards dying as a normal process
3. Neither hastens nor postpones death
4. Integrates psychological and spiritual aspects of patient care
5. Offers a support system to patients to live as actively as possible til death
6. Offers a support system to help families cope during patient’s illness and in their own bereavement.

There are those in our society who think that if you are diagnosed with dementia it is your duty to “shuffle off” and allow resources to be diverted to such things as finding a cure for cancer in babies.

That is because of fear.

Support for families and patients includes articulating what quality of life and quality of dying mean.

Palliative care teams have to reach out to families.

We have to get better at prognostication. Diagnosing dying is difficult. Doctors are not good at it. The hospice cat seems to be able do it better sometimes!

So, what is optimal care for older people with dementia?[i]

The notion of ‘optimal care’ includes the following principles:

  • That palliative care is applicable to everyone with a life limiting illness
  • it should be person centred
  • it sets goals and advance care provisions
  • it includes continuity, and coordination, of care
  • it has timely recognition of dying
  • it outlines how is care provided (for example, it articulates if transfer to hospital is a good idea, or what medications are necessary)
  • clarity about what optimal treatment of symptoms and provision of comfort means
  • it addresses family care and involvement
  • there is education of the health care team.

All of the above happens in addition to the idea that as a society we have to address ethical issues around dying.

A challenge for those who have a friend or family member die of dementia is often there is a double whammy of bereavement. That is, there is often a social death and then a physical death. It is often very difficult to deal with the social dying when someone perhaps needs to go into an institution and isn’t aware of what is going on around them, then that is followed by the physical dying.

What can we do better?

We need to better educate care staff about end of life care.

We need to have conversations with families about preferred place of care and preferred place of death.

There needs to be recognition of the desire for intimacy. No matter what you are dying with or from, the lack of the ability to have intimacy with the people you love is a real challenge for care providers.

When I go and see people at their own home or in the wards I work in, one of the things they do most commonly is never let go of my hand. They might hold on with one hand and stroke with the other hand, because what they want is to feel skin on skin. That desire does not go away when you get dementia.

A recent study asked people what makes a good death and the answer is a good death is a safe death. That is somewhere the patient and the family feel safe. It doesn’t have to be at home. It could be at a respite home, it could be an oncology unit.

Families need more education about what to expect in order that unnecessary fear and uncertainty are reduced.

There needs to be support for funeral planning so the real person is represented in grief.

Finally we need to better support families and care givers through the end of life for patients with dementia. Carers experience high levels of stress, strain and burden. They are carrying around too much. We have to help them decide what bit of the burden they can put down.[ii]

The message is clear – we need to get better at this – it could be us.

*Author Professor Rod MacLeod is a Palliative Medicine Specialist at Hibiscus Hospice, New Zealand, and a consultant to Hammond Care in Sydney, as well as Honorary Professor in Sydney Medical School.

Professor Macleod was also featured speaking on this topic in
The Australian Senior on 12 February 2019

[i] 2013 White paper defining optimal palliative care in older people with dementia: A Delphi study and recommendations from the European Association for Palliative Care

Jenny T van der Steen, Lukas Radbruch , Cees MPM Hertogh and others on behalf of the European Association for Palliative Care (EAPC)

Palliative Medicine DOI: 10.1177/0269216313493685

[ii]  IPOS-dem – a proxy completed measure for people with dementia living in care homes. It is derived from IPOS, and developed for use by unqualified care staff working in care home settings. It is designed to support systematic assessment of care home residents with dementia and incorporates common symptoms and problems experienced by the population. It is accompanied by an instruction manual.