Ask the expert: Preparing for end of life

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Author: Johanna Stiefler JohnsonPublished: 10 June 2021

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A health care worker and a man in a wheelchair smile at each other in the outdoors.

In the latest in our ‘Ask the expert’ series, Estonia-based neurologist Dr Pille Taba discusses how people can prepare for palliative care – and why she thinks a multidisciplinary approach to treatment is even more crucial near the end of life

What is palliative care?

Palliative care is defined by the World Health Organization as an approach that improves the quality of life of patients and their families, when they are facing challenges related to life-threatening conditions. Palliative care was first introduced for pain management and focused mainly on people with cancer, but its reach has broadened by now – involving other chronic conditions that deteriorate physical and mental conditions. These include neurodegenerative conditions such as Parkinson’s disease.

Various models for implementing palliative care exist, with adaptations in specific social, economic and cultural settings. As prevalence of neurodegenerative diseases increases in ageing populations, the need for palliative care services will continue to grow.

What challenges can people with Parkinson’s experience later in life?

As Parkinson’s disease is a progressive condition with variable motor and non-motor symptoms, patients may face considerable problems in late stages. Impairment of functions that are difficult to manage may bring limitations in daily activities and increase dependence.

The problems in later stages of Parkinson’s disease include worsening walking disorders, with postural impairment and falls; speech and swallowing disorders; and progressive functional disability in the hands. They can also include non-motor issues, which may have a negative impact on quality of life – including fatigue and sleep problems with restless legs or REM sleep disorder, bladder problems and constipation, drooling and orthostatic episodes, mood and behavioural disorders, hallucinations and cognitive impairment.

How can palliative care help people with Parkinson’s?

Even with optimal medical support, the problems that people face in later stages of Parkinson’s disease might be difficult to treat. They may in turn lead to a decrease in quality of life, increased burden to caregivers, distress for families, higher rates of emergency hospital admissions and extensive social and care services. A new concept is that people with Parkinson’s disease may need variable palliative care applications in different stages of the disease, and suggests the need for early recognition and intervention.

This makes it essential for people with the condition to have reliable information and emotional support from a Parkinson’s disease team. This support may include discussions on expectations for future, planning of advanced care, and arranging of end of life activities which take into account individual cultural background. Individual and proactive support would help to manage the progressive condition based on personal needs.

A portrait of Dr Pille Taba

Dr Pille Taba.

What is your advice for people with Parkinson’s who are preparing for end of life?

It is very important for people with Parkinson’s disease and their families to be informed. They must recognise the personal needs that need to be managed, and consider incorporating palliative care.

For the best care, trustworthy multidisciplinary support can be very helpful – particularly from healthcare professionals who specialise in solving broad-based problems. This might include a movement disorder physician, nurse, physiotherapist, occupational therapist, speech therapist – or, importantly, a psychologist or chaplain to help manage psychosocial and spiritual problems, taking into consideration cultural and social specificities.

How can healthcare professionals support people with Parkinson’s when they are making decisions about end of life?

Access to resources is a specific issue for different countries and communities, as palliative care and end of life management varies through European countries.

Still, there is an ongoing need for awareness about palliative care among healthcare professionals – especially in the ability to explain the condition’s progression, accompanying problems, interventions for relief and end of life activities. Skills for identifying spiritual distress and arranging an end of life should be included in the expertise of Parkinson’s disease practitioners, to help people with the condition with any legal and financial issues, existential challenges, care plans, wishes for treatment, wills and anything else that needs to be considered.

End of life care can be a difficult topic to discuss. Do you have any advice on starting or having conversations on this subject?

I agree, end of life discussions are not easy. We are often not used to thinking about death.

Conversations about end of life must respect patients’ readiness to discuss these delicate topics, step by step. There should be a choice to make, or not to make, decisions. After identifying care needs in a person with Parkinson’s disease and providing suggestions for their management, healthcare professionals can share how the condition may progress – when the patient is ready. This conversation might be about complications of late stages of the condition, and how specific palliative applications can help manage these problems.

Conversations might involve identifying the person’s wishes about medical and non-medical aspects of end of life; preferences for living at home or being cared for in a care home; treatment preferences, including resuscitation; wishes for the last moments of life; and even funeral wishes. There might be a need to appoint a personal representative to the person with Parkinson’s disease.

How can friends and carers of people with Parkinson’s disease better cope with end of life?

Grief is always stressful for friends and family. But preparing for end of life can help them to cope with sorrow and mourning. It helps when the wishes of our beloved family members have been discussed and taken into account, and there has been some relief in their last days and passing.

Attention must be paid to carers’ problems and needs, as well. Supporting a person at the end of life can be complex. Carers are part of the team supporting a person with Parkinson’s disease – but on the other hand, they may need support themselves. That’s why end of life management should involve caregivers, to help improve quality of life and satisfaction of the whole family.

When saying goodbye to a close family member, it is important to feel that everything was done in their favour in the last days and years.

Need to know

Dr Pille Taba is a neurologist with a subspeciality in movement disorders, including Parkinson’s disease, based in Estonia. She is head of the Department of Neurology and Neurosurgery at the University of Tartu, Estonia, and President of the Estonian Society of Neurologists and Neurosurgeons. For many years, she has been involved in academic research, while also teaching students and treating people with Parkinson’s disease. In addition to arranging a Parkinson’s disease clinic with multidisciplinary team management and taking part in Parkinson’s Europe initiatives, she helped to found the Estonia Parkinson’s Association in 1994, which now has several local branches in the country. In September, she will become chair of the European Section of International Parkinson and Movement Disorder Society.

Palliative care and Parkinson’s disease

The aim of palliative care is to improve quality of life for a person with Parkinson’s disease, along with their family members and carers. As a holistic approach to treatment, palliative care aims to address emotional, psychological and spiritual needs while supporting a patient’s control and choice over certain aspects of care. Anyone at any stage of an illness can receive palliative care, but it is particularly important towards the end of life. 

To find out more about Parkinson’s later in life, please visit Parkinson’s Europe website.

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