In the later phases of Parkinson’s, your care needs are likely to be more complex. Thinking about the decisions you will face in the future and planning ahead will give you, your partner, carer, family and friends peace of mind, and make sure your physical and emotional needs are met in the best way.

Discussing your end of life plans with loved ones

Talking to people close to you about what might happen in the advanced stages of your Parkinson’s can be difficult, but it will help you cope better with the future, and continuing this conversation over time will also help both you and your loved ones to adjust gradually to each stage of the condition. This can be particularly important if you become unable to make decisions for yourself.

Some people find it helpful to think of their end of life as having a ‘good death’, one which is dignified, comfortable and free from pain, allowing you to find inner peace and to say goodbye to loved ones.

Some of the things you may like to think about are:

  • where you would like to be cared for (in a hospice, hospital, care home or at home)
  • whether you wish to refuse certain treatments
  • what you would like your final days to be like
  • who will talk with any children or close family towards the end if you are unable to
  • whether you want to donate your organs, including your brain
  • any religious or cultural wishes you would like observed
  • who will take care of any pets.

If you are caring for someone who is reaching the end of life or are close family, it is also important to think about life without them. Find more advice in our Carers section.

What is palliative care?

If you have an incurable condition, such as Parkinson’s, palliative care is about improving your quality of life by managing your symptoms as they progress and relieving any pain or distress. It gives you control over what kind of care you receive and where, and also supports your emotional and spiritual needs.

It can be delivered by a specialist palliative care team, as well as key members of your ongoing MDT (multidisciplinary care team) such as your physiotherapist, speech therapist or dietician. Your loved ones should remain an integral part of this care team as well.

The main principles of palliative care in Parkinson’s are:

  • focusing on quality of life, including good symptom control
  • discontinuing any unnecessary medication or inappropriate interventions such as blood tests and scans
  • responding to your psychological, social and spiritual needs
  • caring both for you and those close to you
  • maintaining open and sensitive communication between you, your family and healthcare team
  • respecting the individual choices you and your family make, for example treatment options and deciding where to die.

When should palliative care in Parkinson’s start?

As Parkinson’s affects everyone differently, when to start palliative care is a very individual decision, and it can begin at any stage of your Parkinson’s journey.  The earlier you have conversations about your Parkinson’s progression, the easier it will be to plan for the extra support you may need later on.

Types of palliative care in Parkinson’s

As Parkinson’s progresses and symptoms no longer respond well to treatment, daily living and quality of life become more difficult. Some of the common difficulties and treatment options for the later stage are:

Reduced response to Parkinson’s medication and re-emergence of symptoms

As Parkinson’s medications become less effective over time, other physical symptoms may re-emerge and pain may worsen. Your doctor will continue to monitor and adjust your medication – the key is to come up with a personalised approach that balances symptom control with quality of life.

Bladder and bowel problems

As Parkinson’s medications become less effective, bladder control might be lost and bowel problems like constipation may worsen. Your doctor can prescribe various medications to help.

Mobility and balance difficulties

As your movement control gets worse, you might experience more falls, and spend longer periods of time in a bed or chair, which can be uncomfortable. Depending on where you live, a physiotherapist and/or an occupational therapist will be able to help: they can provide strategies to minimise your risk of falling, suggest comfortable positions for lying in bed or sitting down, and advising carers on safe lifting and turning to avoid injury.

Pressure sores and stiff joints

Poor blood supply caused by prolonged pressure on a particular part of the body can cause pressure sores, and lack of movement can also cause stiff joints and reduced movement. A physiotherapist can suggest strategies and exercises to help you maintain movement and strength.

Swallowing difficulties

If eating and drinking become too difficult or are no longer possible, a speech and language therapist or dietician can advise on a change in diet consistency or artificial feeding via a tube. They can also help reduce the risk of aspiration pneumonia (infection caused by food or liquid entering the lungs)

Drooling

If persistent drooling becomes a problem, your doctor might prescribe medication, or a speech and language therapist can also suggest ways to reduce drooling.

Communication problems

Communication including body language, facial expression, verbal responses and the written word may become difficult. This can make it harder for you to stay involved in decisions about your treatment, but a speech and language therapist can advise on alternative means of communication, including alphabet charts, and electronic communication aids such as Lightwriters (a small handheld computer) and voice amplifiers.

Mental and psychological problems

Depression, anxiety and stress may get worse in the later stages of your Parkinson’s, so emotional and psychological support from trained professionals like psychologists and counsellors is very important. Some people also find complementary therapies like massage, aromatherapy and meditation can reduce stress, provide a sense of calm and even reduce pain and sleep problems.

Confusion and dementia

The risk of confusion and dementia increases in the latter stages of Parkinson’s and additional support from specialist mental health professionals such as psychologists, psychiatrists or counsellors may be helpful.