End-of-Life Issues in Caring for Patients With Dementia

Introduction

Alzheimer’s disease is recognized as the leading cause of dementia, and is a chronic degenerative progressive disease. Along with the other dementias, disease progression in the moderate-to-severe stages just about share a common clinical pathway, being that ultimately admission to a specialist dementia ward, nursing home, or an acute general hospital ward results for a multitude of reasons. The average length of survival from time of diagnosis of dementia has been underestimated in previous studies due to the rapid course in some of the patients, the so-called length bias. ¹ Additionally, the onset/diagnosis of dementia in later life is an independent predictor of shortened life span, independent from other identified risks factors. ² Considering the debilitating nature of the disease, especially in the advanced state, there is a constituency of scientists and clinicians who argue strongly for dementia, especially advanced dementia to be considered a terminal disease and managed as such in the very last stage.^3,4 The push in the direction of advanced dementia being considered a terminal disease/illness seeks to ensure that people with dementia, whose numbers appear to be growing, ⁵ will have a dignified death with well-managed palliative care pathways at the end of life (EOL), as those that currently exists for terminal cancer patients, for example. This last statement is based on the observations by some authors that the EOL experiences of patients dying from dementia is very similar to that of terminal cancer patients. ⁶ In the United Kingdom, a parliamentary report did document the disparity in EOL care pathway of patients with cancer, as compared to other patients with other kinds of terminal illnesses, including dementia. ⁷

Discussion

As dementia is more and more talked about, and the evidence indicates a relative rise in the number of patients with dementia in comparison with other chronic progressive illnesses,^5,18 with an associated economic burden^18,19; attention shifts more to what sort of care these patients ought to get at the EOL. The sort of care patients with dementia with EOL needs gets muddled in large part from a lack of consistency, especially in terms of whether dementia is a terminal illness,^3,4,20 and whether dementia directly causes death, ³ as well as the whole debate as to what time period determines EOL in dementia and hence EOL care.^3,20 If one were to go beyond the hurdle of definitions of terms and semantics debate, the next step is to develop appropriate “guidelines” in relation to EOL and EOL care pathways where patients with dementia are concerned. EOL guidelines for patients suffering from dementia show a relatively a common theme nationally and internationally, unfortunately the evidence to support them is weak and sparse. ²⁰ Then there are the legal considerations that raises the issues of using advanced directives,^20–22 and or psychiatric advanced directives or “Ulysses contracts,” ²³ in implementing the treatment refusal wishes of the patients with dementia, if they are already in place. Albeit noting that these directives are not necessarily legal binding, subject to interpretation; as well as the attitude of some medical personnel in carrying out the pre-morbid stated wishes of the patient with dementia, when they present in emergency settings/situations.^23,24 Additionally the role of carers and other extraneous factors in the decision-making processes of implementing palliative care for patients with dementia should not be overlooked.^20–22

The issues highlighted pose a challenge for dementia care professionals as to which point should determine a shift in care strategy that is from active care to palliative care, considering the longitudinal progression of dementia illness. This stage for initiation of the palliative pathway in practice may be when the multi-disciplinary team (MDT) caring for the patient with dementia, decides further active treatment is futile; which could be a subjective driven decision based team hierarchy or how the dynamics play out. For patients with severe or advanced dementia with no co-morbid physical health problems, when and how does the palliative care pathway get introduced into their management plan? Various authors have written about indicators of mortality in patients with dementia. Using subscales on cognitive scores, activities of daily living (ADLs) scores, or alternatively functional disabilities and physical frailty ratings on the minimum data set 2 ([MDS-2] predominantly used in North America and other parts of the world), the authors have concluded that combined with age and comorbid illnesses such as cancer, diabetes mellitus, renal failure, heart failure, and other symptoms, patients with dementia in nursing homes have a high probability of dying within 6 months.^6,24–26 The MDS test is an assessment tool with over 300 plus items covering demographic, functional, and clinical characteristics of the study participants. ²⁴ Others have come up with prognosis indicators using the functional assessment or functional assessment staging (FAST) instrument with stage 7(c), almost positively predicting death within 6 months. ²⁷ Combining the MDS subcomponent assessment subscale scores with the MSSE score and the FAST instrument may better guide dementia care professionals in directing patients with dementia (especially those in the severe stages) along the palliative care pathway. Hopefully this may ensure a well thought through EOL care pathway as opposed to unnecessary suffering and ensure a death with dignity, for patients with dementia.

The ethical aspect of planning and implementing palliative care plans at EOL for patients with dementia is important in more than one way. Granted the report of the Nuffield council of bioethics on ethical issues surrounding EOL in patients with dementia, ²¹ issues of ethics will still haunt dementia care professionals, patients, and their carers. An important ethical (and legal) issue centered on moral legitimacy, is the “validity” of advanced directives at EOL, when the patient most probably may not be able to participate in the discussion. Granted advanced directives (AD) are meant to smoothen the pathway especially where treatment/intervention refusals are concerned, this in practice may not be the case, as there could be a personhood-based challenge to the AD.^21,28,29 The situation pitches the strength of autonomy against personhood (as a number), philosophically speaking. ³⁰ The following issue was raised in this situation: is the patient with dementia at the EOL the same person the AD he or she signed meant to apply to. There are others who advanced the proposition that instead of relying on advance directives, practitioners should weigh the AD versus the use of the best interest option, and under the latter option include the views of carers’ families and so on. ²⁹ This last point appears to fit the proposal used in one study about implementing a holistic palliative care management for EOL care of patients with dementia. ²² In the United Kingdom, since the enactment of the mental capacity act, AD provisions that have been appropriately drawn up and signed are considered binding by law. ³¹

Conclusion

With more publicity and campaign activities spearheaded by various organizations with interest in dementia and EOL issues related to persons with dementia, more and more attention may be directed toward the issue of palliative care services for patients with dementia. This last point is of importance considering the observation that aggressive management (use of antibiotics, PEG feeding, etc.) of acute illnesses, in cases of patients with advanced dementia, in most instances have poor outcomes. ³² Much effort is being put in, in principle, to get a service similar to the palliative services that patients with cancer receive.^13–15 Obviously much remains to be done in this direction. ¹⁶ In the meantime, clinicians need to be more creative in the care of patients with dementia at EOL, by coming up with innovative and reproducible ways of managing EOL palliative care. ²²

Commissioners of care delivery to this special group of patients should pay heed to recommendations from the national center for palliative care on how to effectively carry out the department of health initiatives for this special group. ¹⁶ At the same time, attention should be paid to recommendations of the national center for bioethics on ethical guidelines in managing EOL issues for managing patients with dementia. Clinicians, carers, and all involved in managing patients with dementia should encourage them early in the course of the disease to prepare AD under proper legal guidance to avoid ambiguities, considering the potential “unknowns” of the future. Health care professionals caring for patients with dementia should understand and be able to comfortably use the 4 principles ³³ and or the 4-quadrant ³⁴ ethical problem-solving reasoning methods to navigate the ethical problems that they may encounter at EOL, as well the moral philosophical theories that underline the use of these methods. In considering palliative care pathways to managing EOL care pathways for patients with dementia, health care personnel should seek to do this along lines of the holistic concept of palliative care as developed in England at St. Christopher’s hospital in the 1960s, ³⁵ which began the whole palliative care movement, as opposed to “pain control- only” palliation.