In Norway, the majority of elderly people spend the last part of their lives in nursing homes. Nursing home residents typically suffer from multi-pathological health problems, with dementia as the most frequent diagnosis (1). When frail elderly patients are facing life-threatening illnesses, tough choices must often be made. Current Norwegian health care guidelines underline the importance of patient autonomy, shared decision-making, and informed consent, and, terminally ill patients have the legal right to decline life-prolonging treatment (2; 3).

However, informed consent and patient participation require that the patient is able to understand what is at stake and form a stable opinion about what course of action to choose. If the patient is suffering from dementia, as more than 70 % of nursing home patients are, shared decision-making becomes problematic. Official laws and guidelines are of little practical value if the patient is not given a chance to express his or her own wishes and preferences. To further complicate matters, in Norway advance directives are not legally binding, in contrast to what we find in many other countries, such as Denmark, Germany, the US, Canada and Australia.

The old Hippocratic adage tells health care workers to “cure sometimes, treat often, care always.” Whether to cure or treat or simply to care can be difficult to decide solely on medical grounds. Today, patients should be in the loop, even if many patients cannot participate in a rational manner, and even if advance directives are not binding.

Health care personnel are versed in establishing what is in ‘the patient’s best interest’, this ability is an important part of being a professional carer. At times, the professional opinion is the only basis available for making difficult choices. The patient's presumed consent would probably be more nuanced if his or her next of kin were consulted, as friends and relatives are often in the know about the patient’s values and preferences – at least what his or her opinions used to be like. However, if the patient’s values, preferences and goals of care were recorded before the patient’s cognition became radically impaired, the basis for a decision would be even firmer.

For different reasons, advance care planning, or even discussions about terminal care, seldom take place in Norwegian nursing homes (4). In fact, only a minority of Norwegian nursing homes record patients’ preferences concerning medical treatment as part of their routines when (or shortly after) patients are admitted to the nursing home. Furthermore, a recent study showed that less than half the nursing homes had routines for conversing with the next of kin when the patient entered into a terminal or pre-terminal phase (4).

Sometimes the consequence of omitting such discussions is that the patient does not receive the medical attention that he or she wishes for. At other times, uncertainty, backed by a professional commitment to saving lives (or by the pleas of the next of kin), leads to over-treatment and death in undignified circumstances – e.g. in an ambulance rushing to the hospital, in the emergency room, or simply in an unfamiliar hospital setting – situations that in hindsight hardly seem desirable. Prolonging life at all costs may have been in line with the patient’s preferences, but how can we determine the standpoint of a patient with severely impaired cognition? Health care workers, especially those working in nursing homes, must frequently consider questions like:
• How to discuss end of life care issues with the patient?
• Should the frail elderly be given life-saving/-prolonging treatment when it is impossible to establish their preferences?
• When is an advance directive valid (if not binding)?
• How can we take care of the dignity of a patient when autonomy has lost its meaning?

Quality end of life care implies meeting the patients’ physical, emotional and social needs in a manner that is felt to be dignified and respectful. Adequate resources and good organisational solutions are required, but the quality of the service depends primarily on the knowledge, skills and attitudes of the people working face to face with the patients. Norwegian nursing homes are currently facing great challenges in these respects. In 2007, more than one third of those working in municipal nursing homes and home care had no professional training, and the problems associated with recruiting and retaining qualified personnel have been well documented (6). Furthermore, in many nursing homes, doctors are employed one day a week or on an hourly basis (7; 8). This shortage of personnel means that only the most urgent medical needs can be met, while other important tasks such as general care, clinical communication, continuity of care, planning and coordination, and time to attend to psychosocial needs are lacking (7; 9; 10).

This is a challenge which is clearly felt today, and which will become more tangible in the years to come, as the population of Norway (5), and indeed most Western countries, is ageing. Another factor that makes this a pressing issue is that the Norwegian population is becoming more heterogeneous. That is to say, there will be elderly people with different backgrounds and perspectives that challenge the notion of ‘the patient’s best interest.’ In other words, we cannot assume that there will be one correct professional answer – developing fair procedures is therefore crucial. So what do we do? Where do we begin?

Reference List
(1) Engedal K. [Assessment of dementia and use of anti-dementia drugs in nursing homes]. Tidsskr Nor Laegeforen 2005 May 4;125(9):1188-90.
(2) Ministry of Health and Care Services. Mestring, muligheter og mening. Framtidas omsorgsutfordringer (Long Term Care - Future Challenges). 2005. Report No.: St.meld.nr 25 (2005-2006).
(3) The Patients Rights Act, Ministry of Health and Care Services, (2010).
(4) Gjerberg E, Forde R, Bjørndal A. Staff and family relationship in Norwegian nursing homes. Nurs Ethics 2010. (Accepted for publication.)
(5) Ostby L. [The aging population of Norway]. Samfunnsspeilet 2004;18(1):2-8.
(6) Directorate for Health and Social Affairs. Rekruttering for betre kvalitet. Rekrutteringsplan for helse- og sosialpersonell 2003-2006 (Recruitment of Health Workers). Oslo: Directorate for Health and Social Affairs; 2004. Report No.: Rapport nr 1.
(7) Forde R, Pedersen R, Nortvedt P, Aasland OG. [Enough resources to the care of the elderly?]. Tidsskr Nor Laegeforen 2006 Aug 10;126(15):1913-6.
(8) The Norwegian Medical Association. Når du blir gammel og ingen vil ha deg (When you grow old and nobody wants you). Oslo: The Norwegian Medical Association; 2001.
(9) Dreyer A, Forde R, Nortvedt P. Autonomy at the end of life: life-prolonging treatment in nursing homes--relatives' role in the decision-making process. J Med Ethics 2009 Nov;35(11):672-7.

(10) Pedersen R, Nortvedt P, Nordhaug M, Slettebo A, Grothe KH, Kirkevold M, et al. In quest of justice?  Clinical prioritisation in healthcare for the aged. J Med Ethics 2008 Apr;34(4):230-5.

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	Autonomy and Dignity in Nursing Homes