There’s a need to better balance clinicians’ evidence-based bias and older patients’ value-based preferences in shared decision-making, write a collaborative of researchers and advocates from Queensland and New South Wales.

Older people today may be more willing to discuss end-of-life treatment preferences than in the past two decades. However, solely focusing on decision-making may burden uninformed patients and distressed caregivers and families.

While shared decision-making implies shared responsibility for the best outcome, inadequate communication, complex advance directives and the urge for medicalisation can negatively impact the process. The way forward includes public education on the purpose, harms and benefits of life-sustaining therapies and awareness raising among clinicians about attitudes and interventions that may not be in the patient’s best interests.

In the absence of a family member or surrogate, clinicians often find themselves having to guess or assume older people’s end-of-life care preferences and goals in non-ideal settings such as the hospital emergency department after flare ups of chronic illness.

These discussions tend to manifest as transfer of information about the medical aspects of dying rather than as timely and honest consultations resulting in joint decisions. This means missed opportunities for timely referral to palliative care, which could minimise preventable harm and preclude the achievement of a good death.

Reasons reported in the medical literature for delayed clinician-patient discussions about end-of life preferences include:

  • lack of skills or self-confidence in communication
  • prognostic uncertainty and lack of recognition of dying trajectory
  • apprehension about patient’s responses to bad news
  • clinicians’ lack of time to support patients after sensitive conversations
  • perceptions that families cannot accept a poor prognosis
  • clinicians’ sense of failure when patients deteriorate or die under their charge.

Whose values and preferences?

Families perceive the concept of a good death as acceptance of the impending death, preservation of the dying person’s dignity, respect for treatment choices and taking a sense of control. They place more emphasis on value-based medicine, an approach that meets their unique needs and preferences. Whereas clinicians may be more concerned with successful hospital discharge after technically effective treatments based on evidence.

Available evidence suggests that clinician values and preferences have significant influence on the likelihood and nature of end-of-life discussions. Clinicians are more inclined to discuss options with people who are married or have an accurate understanding of their prognosis and less prone to do so if the patient is of advanced age.

Further, clinicians are more likely to recommend withdrawal of active treatment in the presence of cognitive deficit, artificial feeding, uncontrollable pain, multiple comorbidities, poor functional status or if an individual is unable to communicate.

However, this may not be acceptable in all cases. Concerning indication exists that religious physicians are more likely to recommend full medical or palliative treatment regardless of prognosis only if they believe it will improve quality of life.

Satisfaction with decision-making is lower when decisions are inconsistent with a person’s preferences. But unfortunately, the prevalence of advance health directives is also low in Australia. Thus, assistance for surrogates and clinicians in determining patient values and preferences is not always available.

Solutions for a better future

Overly optimistic intervention outcomes by both individuals and doctors can lead to over-diagnosis and overtreatment. Several strategies targeting individuals or populations have been identified to empower older people and surrogate decision-making and address clinicians’ biases:

  • explicitly disclosing prognosis and options to achieve realistic expectations and obtain informed consent
  • involving more than one clinician of different occupation in the recommendation and refraining from seeking to unduly influence patient choice
  • actively inviting surrogate non-clinician decision-makers into the discussion and using structured decision aids
  • holding the conversation at several time points along the journey to ascertain patient or family stability of and satisfaction with the decision.

Some people who may prefer to die at home are unaware of the burden that may impose on informal caregivers, or the limited availability of palliative and community support services.

Work remains to raise public awareness about the limitations of modern health care, the inevitability of death from advanced chronic illness and the benefits of de-medicalising dying.

A public education campaign to improve the uptake of advance care directives and awareness of available facilities or health packages could help map services to individual’s needs and preferences. This may help achieve a better balance between clinicians’ evidence-based practice and societal attitudes.

We need to support older people in end-of-life discussions for genuinely informed decision-making aligned with their wishes and values so they can take control over their own quality end of life.

This article was written by the Improving End-of-life Advocates. The authors include Associate Professor Magnolia Cardona, Mr Ian Jun Yan Wee, Ms Ebony T Lewis, Dr Jenny Hunt, Professor Ken Hillman, Dr Sally Greenaway and Dr Danielle Ní Chróinín.

A longer version of this article appears in Australian Ageing Agenda magazine (Jan-Feb 2020)

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