Providing palliative care perspectives on dementia and ageing

Latest dementia research, transitioning to palliative care and enhancing spiritual care were key themes of HammondCare's 13th annual palliative care seminar, Making Every Moment Matter, held last week.

An ageing population means an increasing interaction between palliative care and dementia. Associate Professor Sue Kurrle, one of Australia's leading dementia physicians and researchers, told delegates that in clinical practice many conditions associated with dementia were often unrecognised and needed to be identified and managed appropriately to improve the care of people with dementia.Attended by a wide-range of palliative care health professionals, the seminar was opened by HammondCare Chief Executive Dr Stephen Judd and chaired throughout the day by Professor Rod MacLeod and Dr Peta McVey.

Physical conditions that come with dementia

A/Prof Kurrle highlighted the physical comorbidities of dementia of which she said there was "little knowledge" in comparison to the emphasis on the cognitive, behavioural and psychological symptoms of dementia.

"A number of conditions occur more commonly in people with dementia than in the older population without dementia," A/Prof Kurrle said. "This is vital when you consider most people I ask say they want to live to 85 - if so, that means half of us will have dementia in our lives and the other half will know someone who does."

A/Prof Kurrle said that a literature review of 3800 articles had highlighted a range of comorbidities:

  • falls - annual incidence of falls in cognitively impaired population is 70-80 per cent
  • epilepsy - six-fold increase in dementia over normal older population
  • delirium - presence of dementia increases risk of delirium five-fold
  • frailty - weight loss, low activity, slow gait are all risk factors for dementia
  • malnutrition - people with Alzheimer's are likely to lose on average more than 5kg during course of disease
  • gum disease/dental disease - poor oral health more common in people with dementia
  • visual impairment - Blue Mountains Eye Study showed significant association between impaired visual acuity and cognitive impairment
  • sleep disorders - Up to 50 per cent of people with dementia or their carers report sleep disturbances
  • incontinence - loss of cognitive ability to interpret the sensation of a full bladder, loss of motivation to inhibit the passage of urine, and inability to plan how to self-toilet.

"A lot of the behaviours that happen in dementia are related to needs such as these physical conditions and by treating them correctly, we can help improve quality of life for the person with dementia," A/Prof Kurrle concluded.

Communication vital in end of life care

A/Prof Josephine Clayton, one of Australia's leading exponents of Advanced Care Planning told the seminar that communication had been identified by patients and families as one of the most important aspects of care at the end of life.

"End of life discussions are important in order to enable patients to die in accordance with their wishes, to give families time to prepare for their loved one's death and to avoid inappropriate interventions at the end of life," A/Prof Clayton said.

"Clinicians need to provide information in a way that assists patients and families to make appropriate decisions, be informed to the level that they wish, set goals and priorities and to cope with their situation.

"Am I going to die? Will I have pain? How long do I have to life? These are common questions clinicians will be asked and until recently there has been a lack of guidance in research literature as to the optimal ways of discussing prognosis and end of life issues."

To address this, A/Prof Clayton was lead member of a team that developed Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers.

Funded by the NHMRC, the key recommendations of the guidelines follow the acronym PREPARED:

  • Prepare for the discussion
  • Relate to the person
  • Elicit understanding and preferences
  • Provide information
  • Acknowledge emotions and concerns
  • Realistic hope
  • Document.

While addressing all of these areas, A/Prof Clayton touched on common communication pitfalls which included talking only about physical issues, avoiding or not noticing emotional cues, giving premature reassurance, minimising or blocking concerns, interrupting the patient and using jargon.

Planning future medical treatment

A/Prof Clayton then focused on Advance Care Planning which is a "process of reflection, discussion and communication that enables a person to plan for their future medical treatment and other care, for a time when they are not competent to make, or communicate, decisions for themselves."

"ACP involves an ongoing, dynamic discussion between patient, key family members/others, and key health professionals - not a one off event. The patient's readiness to talk about what's next or their future care should be assessed and an offer made - without forcing.

"Ensure that the patient and/or family understand the medical situation to the level that they wish, taking into account the PREPARED principles.

"And uncover the big picture for the patient and family - their values, goals and priorities for their remaining life; their fears and their wishes - before discussing specific treatment options."

A/Prof Clayton said research showed ACP held clear benefits for patients and their families as well as health professionals but training in how to communicate around these issues was vital because "it is not as simple as it seems."

"It's difficult for patients, and it is difficult for loved ones and we know that not only is it difficult for staff, but that health professionals who report insufficient training in communication have higher rates of burnout."

Other speakers at the seminar included:

  • Dr Michael Barbato - Honorary Research Fellow, Port Kembla Hospital - who spoke on Reflections on Spirituality;
  • Robyn Keall - CNC at Greenwich Hospital - who spoke on Enhancing Existential and Spiritual Care for Palliative Care Patients; and
  • Stephen Dernocoure - Art Therapist, HammondCare - who spoke on Art Therapy: The Living Voice Inside the Image.
Patients highlight importance of spiritual care 

Dr Barbato told the seminar that in a patient satisfaction survey involving 1,732,562 (33 per cent) hospital inpatients in the USA, emotional and spiritual care received one of the lowest ratings of all clinical-care indicators and rated the highest for need of quality improvement.

He spoke of blockages to spiritual care such as poor understanding, low priority in the biomedical system and the fear of becoming emotionally involved.

"Simply speaking, spirituality is the process of discovering who we are, why we are here, and our relationship to others. Like a double helix, the life of the psyche and the spirit are closely entwined and are inseparable."

Robyn Keal referred to research that showed that oncologists focused on physical concerns 27 per cent of the time and spiritual concerns for 1 per cent. This contrasted with our understanding of 'Components of a Good Death', also drawn from research:

  • Affirmation of the entire person
  • Preparation for death
  • Life completion
  • Contributing to others
  • Clear decision making
  • Pain and symptom management

Robyn outlined research and publication she had been involved in including a pilot study of Outlook Intervention for assisting nurses to provide enhanced existential and spiritual care for palliative care patients with the finding that using Outlook was effective, feasible and acceptable in the Australian context.