Patient autonomy in end-of-life decisions is the accepted Western paradigm.
Although patients or their surrogates have the right to refuse or legally withdraw
life-sustaining interventions, many are unaware of their rights. Physicians
must skillfully facilitate such communications about decisions regarding life-sustaining
interventions. Few studies are available that evaluate clinical practices regarding
discussions of sensitive issues such as sedation, pain relief and withdrawal
of life support, let alone the impact of these decisions on ALS. Despite the
importance of good communication, physician education and training in these
skills are largely neglected.
- Improve communication skills to effectively discuss end-of-life issues
with patients with
ALS and family members. Identify the physician, or team member, who will
take the leadership role in end-of-life discussions, and who will, in turn,
the decisions to the other health care providers. This may be done by confidential
correspondence in notes in the health records (patient's chart). Health
care providers should be prepared to support the patient's decisions, regularly
review the patient's decisions and update the patient's chart accordingly.
a partnership between the patient and interdisciplinary team members in
treatment plan during disease progression. This relationship needs to
be established prior to
initiation of end-of-life discussion. The triggers to end-of-life discussions represent the most overt prompts to planning care.
From the time of diagnosis, clinicians
should provide opportunities to discuss all types of care alternatives. Respiratory
central to end-of-life decisions. The reasons behind monitoring pulmonary
function should be
explicitly stated and all options for respiratory care, including symptom
should be clearly explained.
- Adopt a consistent strategy and use it at each
visit. The "CLASS" approach is widely accepted, as is the "SPIKES" method
of delivering bad news. Present
specific choices of medical care as a means of maintaining quality of life
and control over health care delivery.
- Identify decision points (such as changes in respiratory measures)
that need to be routinely discussed between the patient and the health
care provider. Assemble a list of important decision points and implement
studies to assess the impact of standardizing treatment discussion around
- Develop prospective studies that assess specific areas
of communication that are relevant to ALS. Identify optimal timing and
ways to communicate the
diagnosis, discuss illness progression and approach end-of-life issues.
overall disease assessment tool(s) for the patient with ALS that help physicians
identify specific areas of psychosocial need (e.g., spiritual,
social and functional domains).
- Develop prospective studies that evaluate
the type and timing of communication and decision-making discussions regarding
end-of-life decisions, medical
intervention use at the end of life and the utility and durability of
- Improve training in appropriate communication strategies (e.g., the "CLASS" and "SPIKES" protocol) for end-of-life care and include evaluation of skills in these areas when seeking accreditation (e.g., board certification testing).
- Incorporate workshops on improving communication and decision-making processes in training programs in ALS and neurology (e.g., continuing medical education at national meetings, board certification courses and medical schools). Develop new ways to disseminate this information (e.g., Internet-based tutorials). Assess the impact of these tools.
- Provide institutional support for improved communication. Provide easy access to medical interpreters, social workers and patient advocates.
- Establish regular debriefings of all involved in mediated decision making as part of quality assurance in health care facilities.
- Integrate monitoring of communication and decision-making practices into the accreditation process of health care facilities.