Respiratory physicians are often involved in making difficult decisions about the appropriateness of treatment and the prolongation of life in patients with chronic underlying lung disease. Some common clinical scenarios encountered are discussed here. Sometimes, artificial ventilation may prolong the dying process; life has a natural end, and the potential to prolong life in the ICU can sometimes cause dilemmas. In other cases, these interventions are valuable at prolonging life with a reversible complication.
The General Medical Council (GMC) states that doctors have an obligation to respect human life, protect the health of their patients, and put their patients’ best interests first. This means offering treatments where the benefits outweigh any risks and avoiding treatments that carry no net gain to the patient. If a patient wishes to have a treatment that, in the doctor’s considered view, is not indicated, the doctor and medical team are under no ethical or legal obligation to provide it, but the patient’s right to a second opinion must be respected.
Discussions about resuscitation and invasive ventilation are rarely easy but should ideally be held with the patient, their next of kin, and nursing staff, in advance of an emergency situation. Clearly, this is not always possible. Ideally, all decisions regarding resuscitation and the ceiling of treatment (particularly relating to ventilation) should be documented in advance and handed over to on-call teams. Most possible outcomes can be anticipated.
Where it has been decided that a treatment is not in the best interests of the patient, there is no ethical distinction between stopping the treatment or not starting it in the first place (though the former may be more difficult to do), and this should not be used as an argument for failing to initiate the treatment in the first place.
Lasting power of attorney (LPA)
allows an appointed attorney to make decisions about personal welfare, including giving or refusing consent to treatment, if the patient loses their capacity as defined by the Mental Capacity Act 2005. Neither the next of kin nor those with LPA have the legal right to determine any treatment; the responsibility remains with the doctor and MDT, occasionally involving the courts of law.
(also known as living wills and formerly advance directives) are statements documenting what treatment the individual would want in the future or would want to refuse in specific circumstances, should they lack capacity. They are legally binding in England and Wales, and doctors giving treatment against the patient’s wishes expressed in a directive could be prosecuted. In Scotland and Northern Ireland, advance decisions are governed by common law, rather than legislation. If there are concerns about the validity of the document, doctors should seek input from senior colleagues or the hospital medical director. Advance decisions do not have to be written down, signed, and witnessed, unless they include decisions about resuscitation and other potential life-prolonging treatments. The patient must understand the implications of his/her decision, although, if they have capacity, their word can override their advance directive or their legal representative.
COPD is the 4th commonest cause of death in America, and most patients die of respiratory failure during an exacerbation. A commonly encountered clinical situation is where a patient with COPD is admitted with an exacerbation and is in type II respiratory failure. Standard treatment does not improve the respiratory acidosis, so NIV is commenced. Before starting NIV, a decision must be clearly documented as to whether or not NIV is the ceiling of treatment. It may be, especially if the patient has severe or end-stage COPD.
Invasive ventilation in the ICU may be appropriate in certain specific situations, for example:
• In a relatively young patient (i.e. <65y)
• A patient with a relatively new diagnosis of COPD, in whom the episode is the first or second admission
• In the patient in whom there is a very obviously potentially reversible cause for the exacerbation, e.g. pneumonia.
Sometimes, in this situation, a defined time period for intensive care input may be decided, e.g. ventilation for 48h (to allow treatments to work and to allow time to assess for any improvement), with extubation after that time period if no improvement has been made.
Decisions about intubation/ventilation and intensive care admission can only be made knowing the patient’s usual level of functioning and previous QoL. The difficulty is that QoL is a very subjective measure. Objective measures of usual functioning, e.g. measures of daily activity, usual exercise tolerance, and whether home care or assistance with activities of daily living is required, are often more useful in guiding the appropriateness of escalating therapy. With reference to the patient with COPD, the number of hospital admissions and exacerbations and the need for home O2 or nebulizers will also be useful. Helpful information may be obtained from the GP, especially if the previous hospital notes are unavailable. Where limited information is available about the patient and therefore uncertainty exists about the appropriateness of ventilation, it should be started until a clearer assessment can be made. This may be relevant for a patient attending the emergency department where little information is available. The above point concerning the withdrawal of therapy, should it subsequently be found to be inappropriate, also holds.
There are downsides to invasive ventilation: the risk of pneumothorax is increased in those with end-stage emphysema, and the risk of VAP increases with time ventilated (see p. [link]). Knowledge of the risk of these adverse events helps the medical team to balance the argument and make a decision about whether the risks of ventilation are likely to outweigh its benefits. The issue of limited resources should not influence a decision about formal ventilation or ICU admission.
The average length of intubation of patients with COPD admitted to ICU is 3.2 days. These patients have a 20–25% in-hospital mortality, with 50% of patients surviving 1y post-ICU discharge. About 50% will be living independently 1y post-hospital discharge. Clearly, only a very selected subgroup of patients are admitted to ICU, but concerns about prolonged periods of ventilation in this group of patients seem to be unfounded. Patients in whom a clear cause for the exacerbation can be identified (e.g. pneumonia) tend to do better, as there is a treatable cause for the exacerbation, and not just progression of the underlying disease.
The use of antibiotic treatment for pneumonia in a patient with advanced lung malignancy may be inappropriate in some circumstances. The patient’s wishes and QoL, stage and extent of disease, response to other treatments (e.g. chemotherapy) are all paramount. This is another situation in which it might be appropriate to define at the outset the treatments that are appropriate, e.g. 10 days total of IV and oral antibiotics. Note that treatments, such as antibiotics, can lead to improvement in symptoms (e.g. by reducing fever), without necessarily prolonging life, and it may be kinder to continue antibiotics in this situation.
Progressive neurological disease
The decision about NIV in a patient with a progressive neuromuscular disease can be difficult. There is now strong RCT evidence that NIV in patients with some neuromuscular diseases (Duchenne muscular dystrophy, MND, neuromuscular and chest wall disease), improves QoL and survival. Decisions about the requirement and timing of NIV need to be made by specialists in neuromuscular disease, in conjunction with home ventilation teams. Clinical deterioration can usually be anticipated, with serial measurements of spirometry and overnight O2 or CO2. Discussions should take place early on (unless the patient presents in respiratory failure, e.g. due to pneumonia, and subsequent ventilator weaning is difficult). Clinicians, patients, and their relatives may differ in their approaches to NIV in the face of progressive neuromuscular disability, but, of all the palliative options available, NIV can be particularly useful. Further decisions about withdrawal of treatment with progression of the underlying neurological disease of course will still be needed. These can be difficult and require multidisciplinary input. Actual practical NIV withdrawal can also be hard, requiring specialist assistance, but it usually done gradually with sedation cover.