A randomized controlled trial on the influence of structured advance care planning on quality of end-of-life care communication and quality of end-of-life care in patients with COPD.

Advance care planning (ACP) is the process of communication between patients,
family and professional caregivers that includes, but is not limited to, the
completion of advance directives. ACP can change outcomes for patients and
relatives. ACP may be particularly important for patients with Chronic
Obstructive Pulmonary Disease (COPD). Data from patients, their family and
physicians suggest that ACP is uncommon and poorly done. In a recent project
was found that patients with advanced COPD are able to indicate their
preferences for life-sustaining treatments. However, in only 6% of the
patients, the patient and chest physician reported having discussed these
preferences. Patients rated their clinicians' skills at discussing end-of-life
topics as poor.

The hypothesis of the current study will be:
1.1 Structured ACP for patients with COPD will improve quality of communication
about end-of-life care.
1.2 Structured ACP for patients with COPD will not increase symptoms of anxiety
and depression of patients and family members at six months after ACP.
1.3 Structured ACP for patients with COPD will improve quality of end-of-life
care and quality of dying.
2.1 Structured ACP will improve concordance between patient*s preferences for
end-of-life care and the end-of-life care received.
2.2 Structured ACP will reduce psychological distress in bereaved family
members of deceased patients with COPD.

1.1 To study whether and to what extent structured advance care planning for
COPD patients can improve quality of end-of-life care communication.
1.2 To study whether and to what extent structured advance care planning for
COPD patients can influence symptoms of anxiety and depression at 6 months
after advance care planning.
1.3 To study whether and to what extent structured advance care planning for
COPD patients can improve quality of end-of-life care and the end-of-life care
received.
2.1 To investigate whether structured advance care planning can improve
concordance between patient's preferences for end-of-life care and the
end-of-life care received.
2.2 To investigate whether structured advance care planning can reduce
psychological distress in bereaved family members of deceased patients with
COPD.

The study will be a prospective randomized controlled trial in which patients,
who were discharged after an acute COPD exacerbation or who started on oxygen
therapy, will be assessed at baseline and 6, 12 and 24 months after enrolment.
In addition, some patients who completed the study, will be selected for
participation in a qualitative, structured interview about experiences with the
advance care planning study. Patients will be selected based on purpose
sampling until data saturation occured. A focus group interview will be held
with participating respiratory nurse specialists to discuss their experiences
with regard to the advance care planning intervention.

Respiratory nurse specialists will provide the structured advance care planning
session in the patient's home environment in the presence of the patient and
his or her loved ones. Respiratory nurse specialists will prepare the session
with the chest physician in advance. The structured advance care planning
session will pay attention to: reflection upon patient's goals, values and
beliefs; understanding the current and future medical situation, possible
treatments and outcomes; understanding life-sustaining treatments; determining
wishes regarding current and future care; encouraging discussion of advance
care planning with health care providers and loved ones; and appointment of a
surrogate decision maker. The advance care planning session will be adapted to
the patient's needs. The duration will be about 1.5 hours. Respiratory nurse
specialists will be supervised regularly to guarantee quality of the structured
advance care planning session.
After the structured advance care planning session, respiratory nurse
specialists will complete, together with the patient, a feedback form showing
patient's: general goals of care; preferences for life-sustaining treatments;
and questions and concerns regarding end-of-life care. This feedback form will
be provided to the patient, the chest physician and general practitioner.
Finally, patients will receive a brochure about palliative care for patients
with COPD. This brochure is based on the Dutch guideline "palliative care for
patients with COPD"and was developed for patients and their loved ones by the
Netherlands Asthma Foundation.

Interviews and questionnaires will be assessed during home visits at baseline
and after 6 months in patients in the intervention and usual care group (90-120
minutes per visit). At baseline and after 6 months telephone interviews with
the participating family members in the intervention and usual care group will
take place (20 minutes per interview). Patients and family members in the
intervention group will receive a structured ACP session from about 1,5 hours.
Finally, patients in the intervention and usual care group will receive a phone
call 12 and 24 months after enrolment to assess survival status. If patients
deceased during the study period, a bereavement interview will be conducted
with participating family members.
In addition, some patients who completed the study, will be selected for
participation in a qualitative, structured interview about experiences with the
advance care planning study. Patients will be selected based on purpose
sampling until data saturation occured. A focus group interview will be held
with participating respiratory nurse specialists to discuss their experiences
with regard to the advance care planning intervention.
If the hypothesis will be confirmed, the present project can be followed by
implementation of structured ACP by a trained respiratory nurse specialist in
regular clinical care. In addition, the current project provides
recommendations for (Dutch) guidelines on palliative care in COPD. There are no
additional risks expected for the participants.