To Everything There is A Season

The World Health Organization (WHO) considers the provision of palliative care to be our ethical duty as healthcare professionals. However, for patients with dementia, recent research indicates that they may not be referred to palliative care in a timely manner. Whether they are cared for by a geriatrician, neurologist, or primary care physician, the authors contend that there is a lack of criteria for a timely referral for this type of care. As a result, many patients with dementia aren’t referred for palliative care until very late in the disease trajectory. 

A review of literature on advance care planning and end-of-life care for those with dementia is similarly disconcerting. The course of the disease and the stages of functional and cognitive decline are unpredictable, yet discussion and documentation of the patient’s priorities and wishes are often left unaddressed. 

One study noted that in nursing homes, even when documents are completed on admission, they are reviewed only annually; and just 10% of the documents were revisited and/or updated when there was a change of condition. This is problematic because end-of-life preferences can change over time, especially in a crisis.

Elsewhere, there is an absence of tools that would identify those most in need of advance care planning either because they have a serious illness or, in the case of dementia, because their functional status, caregiver support, and quality of life are impaired and not likely to improve. Clearly, discussions should occur early in the trajectory of the disease when the patient can still participate in decision-making.

The literature makes one thing clear:  having advance care documents available when medical decisions must be made is critical. Specifically, “Just because families have laid out clear goals of care for their loved one with dementia does not guarantee that those directives may be taken into account when healthcare providers make medical decisions”. This very real and potentially devastating problem was addressed in a recent Washington Post article and led to the creation of an Advance Care Directive for Dementia. It is available in the public domain and can be downloaded at no cost.

Our Solutions

No doubt there is a problem in advance care planning for those diagnosed with dementia. Fortunately, there are tools to help.

Our Patient Pattern software, measuring the degree of frailty, acuity level, and hospitalization risk, addresses the need for a validated tool to assess when decline is occurring and, therefore, at what point palliative care would be appropriate to offer the patient and family. Frailty, the best predictor of risk for adverse outcomes, sets the stage for conversations and provides an objective measurement to frame the discussions and the decisions.

Finally, those of us who care for patients with dementia in any setting want to do everything possible to have the advance directives completed and available for the next medical crisis. We can advise our families to keep a copy of the documents available or we can recommend online storage of those documents. Our partnership with provides a virtual destination for the documents and they would be accessible to any provider.

The World Health Organization reports that dementia affects 50 million people now with nearly 10 million new cases every year. As partners in caring for this population let’s use every resource available to assure our patients with dementia are afforded an opportunity to plan for their end-of-life care, to revisit their decisions, and to offer timely referrals to palliative care.