Planning end-of-life care with patients with COPD
As the goals of care change, patients with COPD and their family/whānau require realistic advice, as well as support,
from health professionals to make informed decisions and to plan for the future appropriately.
Initiating conversations about end-of-life issues with patients who have COPD can feel daunting to many health professionals,
especially in judging the right time to do so. However, it is best that these discussions take place early. Giving patients
sufficient time, e.g. 12 months, before end-of-life care is required, allows them to plan with their family/whānau how
they want their care to be managed.
Discussions about end-of-life issues are generally less stressful when patients are relatively well; it is reported that
the majority of patients with life-limiting conditions prefer to discuss preferences for end-of-life care early.17 Increased
communication with patients who have a terminal illness is also associated with better end-of-life care and a reduced number
of medical interventions.18 Furthermore, the subject of end-of-life care is easier to revisit with patients
and their family if it has been broached previously. In general, patients and their family/whānau want an honest conversation
that is balanced between realistic information and appropriate hope.19 Current evidence does not support suggestions
that discussing end-of-life care increases the patient’s feelings of anxiety, depression or hopelessness.19
When is it appropriate to discuss “end-of-life care” with a patient with COPD?
The greater uncertainty in predicting mortality in patients with COPD compared to patients with other terminal respiratory
conditions, such as lung cancer, makes it difficult for clinicians to know when it is appropriate to initiate end-of-life
The presence of two or more of the following markers is an indication for a discussion centred on the patient’s preferences
for end-of-life care:17
- FEV1 < 30% of predicted
- Age over 70 years
- Dependence on oxygen treatment
- One or more hospitalisations in the previous year for an exacerbation
- Left heart failure
- Weight loss or cachexia
- Decreased ability to function
- Increasing dependence on family or carer
Another useful strategy when deciding if end-of-life discussions
are appropriate is to consider the question: “Would I be surprised if this patient died in the next 12 months?”
Prognostic markers for COPD
It is also difficult to provide patients with COPD and/or their family with timeframes for disease progression. Decreasing
FEV1 is associated with worsening prognosis in patients with COPD, however, because this measure does not account
for other factors affecting a patient’s health, e.g. co-morbidities, it is not a good predictor of outcomes when used in
isolation.20 Exercise capacity is one of the most important prognostic markers in COPD and is directly related
to how well the respiratory and cardiovascular systems are able to supply oxygen to the rest of the body.20 The
six-minute walking test is an objective measure of a patient’s exercise ability. The Body Mass Index (BMI), Obstruction,
Dyspnoea, and Exercise (BODE) scale is used to assess mortality risk in patients with COPD.
Biomarkers are not widely used for prognostic assessment in patients with COPD; biopsies and lavage are extremely invasive,
breath sampling is highly variable, and serum markers have yet to be validated.20
A copy of the BODE index for COPD can
be found at: www.pulmonaryrehab.com.au/pdfs/BodeIndexForCOPD.pdf
What does advanced care planning involve?
Advanced care planning refers to the process of assisting patients with terminal illnesses to:
- Gain a better understanding of their current and likely future health
- Consider their personal views and values regarding end-of-life care
- Understand the treatment and care options that are available to them
- Initiate discussions around end-of-life issues with their family/whānau
A suggested way to begin a conversation involving advanced care
planning is: “What is your understanding of where you are now with your illness?”.19
What do most patients want to know?
Having entered into this discussion many patients will want to know what they can expect in the weeks and months ahead.
For patients with COPD, advanced care planning should specifically prepare them for complications such as panic and severe
dyspnoea. The patient should also be asked if they have any fears or concerns that they would like to discuss.
Encouraging patients to focus on what matters to them
Advanced care planning should identify the patient’s goals for treatment. This may be assessed by asking: “If your health
worsens, what are your most important goals?”
Discussions on critical functions should also be attempted, e.g: “What abilities are so critical to your life that you
cannot imagine living without them?”19
Some patients may wish to discuss a ceiling of care with a respiratory
During advanced care planning some patients may wish to create a “ceiling of care”. This is a document that is usually
put together by a respiratory physician, and outlines interventions that in the context of the patient being severely incapacitated
are considered futile, burdensome and contrary to the patient’s wishes.21 This can be particularly useful if
the patient is admitted to hospital and is unable to contribute to decision-making at the time it is required; rather than
focusing on intensive interventions to prolong life, other health professionals, who have never met the patient, are able
to provide supportive care that is consistent with the patient’s desires and beliefs. For example, if the situation arose,
would the patient wish to have a trial of mechanical ventilation for acute respiratory failure? A ceiling of care document
is non-binding and patients are free to make alternative decisions about their treatment at any stage.
Asking: “If you become sicker, how much are you prepared to go
through for the possibility of more time?”, is one way to encourage patients to think about the level of intensity of treatment
they are prepared to tolerate in their last days.
It is important to ask patients with advanced COPD if their family is aware of their priorities and wishes, e.g. if the
situation arose, would they want to be intubated or have cardiopulmonary resuscitation attempted? This allows patients
to consider appointing a substitute decision maker (also known as an enduring power of attorney [medical]) in case they
are admitted to intensive care and are unable to communicate their wishes.
Further information on advanced care
planning, including resources that can be provided to patients, can be found at: