3.2 How do we manage the challenges of predicting end of life care in Parkinson’s?
As practitioners you may approach and deal with these challenges in a number of ways:
An individual holistic assessment that identifies changing needs by taking into account the physical, social, psychological and spiritual needs of both the person with Parkinson’s and those closest to them.
Identification of the unmet palliative needs of the person with Parkinson’s through frequent reassessment by the multidisciplinary team.
Identifying prognostic indicators which show relevant deterioration of the person’s Parkinson’s and may be indicative of nearing the end of life.
Timely referral to specialist palliative care services, which have the expertise and experience to manage the complex care needs that may arise. Because of the fluctuating nature of Parkinson’s, it may be necessary for specialist palliative care input several times throughout the condition’s trajectory.
Advance care planning (ACP) – it is important for the health professional to identify and be sensitive to indicators that the person with Parkinson’s or their family want or need to have a discussion about prognosis or future care.
In some ways our approach to these challenges is brought together through advance care planning (ACP). Here we look at ACP in greater detail due to its importance in delivering person centred end of life care. Advance care planning has been identified as an area of palliative care which is NOT consistently occurring and often takes place too late in the condition.
This is especially important in Parkinson’s, as the high incidence of cognitive deterioration and dementia can mean a person with Parkinson’s may not be able to express their desired preferences for their future or end of life care if ACP is not initiated early in the condition.
Research has shown that advance care planning will enhance the quality of care for that person and those closest to them (Detering et al, 2010).
Therefore it is important for you to identify and be sensitive to indicators that the person with Parkinson’s, or their family, want or need to have a discussion about prognosis and future care.
Initiating this conversation at the appropriate time will allow the person with Parkinson’s to receive timely information, enabling them to:
- make informed decisions about their future care
- have realistic expectations
- avoid inappropriate burdensome interventions at the end of life
With the permission of the person with Parkinson’s, this discussion needs to be documented, regularly reviewed and communicated to key people involved in their care (The Irish Palliative Care in Parkinson’s Disease Group, 2016).