Non-malignant / End Stage Disease

There are many illnesses other than cancer that may benefit from specialist palliative care input. These include: neuromuscular disorders (MS, MND, Parkinsons disease), COPD, end stage organ failure, dementia and many other chronic life-limiting illnesses where the person has reached the final stage of their disease.

However, a smaller proportion of people with non-malignant life limiting illness access palliative care services, despite good evidence of the benefits to their often complex and potentially unmet needs. Reasons for this include: lack of referrals from the treating specialty due to greater difficulty in predicting prognosis for non-malignant diseases, lack of funding for long-term palliative care, and a perception that a referral is a sign of giving up. It is also unknown how acceptable palliative care is to people with non-malignant or chronic disease. [1]

Palliative care services can be concerned that extending services to non-malignant disease will result in them being overwhelmed with clients. Development of referral pathways between specialities and palliative care services may help to overcome some of these barriers. Different models of care are required to meet future demands. [2]

Many specialist nurses work alongside palliative care services and vice versa. These relationships are important to help ensure that any patient with a life-limiting illness can access palliative care or a palliative approach and good symptom control. For example, a nurse consultant in heart failure will work closely with a palliative care nurse to manage symptoms and end of life care issues for people with heart failure.

CareSearch Evidence

  1. Coventry PA, Grande GE, Richards DA, Todd CJ. Prediction of appropriate timing of palliative care for older adults with non-malignant life-threatening disease: a systematic review. Age Ageing. 2005 May;34(3):218-27.
  2. Boland J, Martin J, Wells A, Ross J. Palliative care for people with non-malignant lung disease: summary of current evidence and future direction. Palliat Med. 2013 Oct;27(9):811-6. Epub 2013 Jul 9.

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Last updated 22 January 2017