Good communication is the key to managing the end of life phase well. Patients and their families value honest and open communication. Many patients want to know more than they are currently being told and find healthcare professionals reluctant to talk about their issues [9–11]. A particular concern is a lack of understanding among patients of the severity and prognosis of progressive, non-malignant conditions such as COPD, fibrotic lung disease, and advanced bronchiectasis. A majority of complaints about end of life care are in relation to communication [12].

Clinicians often want to protect patients from losing hope, or worry that patients may not be ready for key discussions. Sometimes there is a reluctance to acknowledge treatment failure, uncertainty about prognosis, or a lack of time and skill to undertake such conversations. One of the goals of this book is to reinforce the concept that active disease-modifying care can run alongside palliative care, and that palliative care is not entirely dependent on an accurate prognosis. Patients often expect healthcare professionals to lead these conversations, and pick up on the professional reluctance to discuss them. Sometimes questions such as “How do you see the situation/future?” “What hopes/fears do you have?” or “What worries you most about the future?” can be useful triggers to such discussions.

Patients and families have mixed requirements for information, sometimes not having enough information and at other times being overloaded. A flexible approach is essential. Opportunities to discuss issues may need to be given repeatedly. Often the style of communication is as important as the words that are said. Key components include the following:

In addressing this situation, understanding the motivation behind this question is important. Is she worried about the future, either for herself or her husband? Does she need to make specific plans? What would be helpful for her? Key aspects of communicating include listening as well as talking, recognizing uncertainty, and acknowledging anxiety and distress. Patients do not always expect answers, but appreciate an honest acknowledgement of the situation and affirmation that whatever happens they will not be abandoned. Uncertainty about prognosis should not stop discussion – focusing on specific issues and how to address them is often easier than trying to guess the timing of those issues. Communication should occur only at a pace that is appropriate for the individual patient rather than forcing conversations to fit a professional timetable or checklist.

As patients approach the end of their life, there needs to be a shift in the focus of their care so that treatments are aimed at maximizing quality of life rather than just extending life. This requires recognition from both the patient and the clinical team that the patient is toward the end of life. The shift required in focus of care will be different for each individual patient but there needs to be acceptance that the aim of treatment is no longer curative.

Mrs Smith with progressive COPD may be reaching the end stages of her illness. She may have practical or emotional things she wishes to plan for. She may also want to think about how future exacerbations will be managed. She may consider whether she would rather spend time in hospital in the hope of prolonging life, or whether she would rather stay at home and accept that life may be shorter without some treatments. Depending on her precise clinical status, the medical team may strongly advocate hospital treatment or conversely may feel that further treatments are unlikely to help the situation. Decisions do not need to be made in one consultation. This should be an ongoing process. Sometimes it is appropriate to continue with intensive disease-modifying treatment because this can often be a way to relieve symptoms and to maximize quality of life.

In patients with advanced disease, decisions have to be made about the appropriate level of treatment. Sometimes this decision is obvious. If a patient presents who is known to have very advanced disease which has now progressed such that the patient is dying, the benefit of burdensome treatments should be questioned. The treating clinician should always identify the intended benefit of the proposed treatment. Patients can be offered treatment to make themfeelbetter, but this is not the same as making the underlying condition better. Conversely, patients may have advanced disease but present with an acute complication, such as a pneumothorax, that is reversible, and treatment is likely to relieve distress and may restore the previous quality of life.

Many respiratory diseases, such as COPD, cystic fibrosis, or fibrotic lung disease, follow a chronic disease trajectory, characterized by exacerbations and recovery against a background of slow progressive decline. It is possible that one of these exacerbations may be the last one and that the patient may not recover but it can be difficult to tell when this will occur. This is very different from a typical cancer trajectory. Models of palliative care provision which make an artificial divide between disease-modifying treatment and palliative care are usually inappropriate for patients with chronic lung disease. Palliative care providing symptom relief and support needs to run in parallel with disease-modifying treatments and emergency care for acute exacerbations and complications. When it is uncertain whether a deterioration is reversible or not, it is reasonable to offer a trial of treatment, and patients may have clear wishes about how they wish to be treated. Treatment options should be explained, including the option of comfort measures only. If a trial of treatment, such as non-invasive ventilation, is being considered, it may be appropriate to discuss the concept of a ceiling of care.

Mrs Smith needs a frank and honest discussion about her understanding of her disease and the treatment options, including the option of no treatment. Because exacerbations make her severely unwell and breathless, she is keen to try treatments but says that if it is clear that they are not working, then she would like her symptoms managed in alternative ways. She has always made it clear that she would like to die in her own home.

Having a frank and honest discussion, including acknowledging the possibility that treatment may not work and she may die, may allow her to express her preferences about end of life care – both what she would want and where she would want it.

In such circumstances, it is also appropriate to consider whether cardiopulmonary resuscitation (CPR) would be appropriate in the event of a cardio-­respiratory arrest. This is an area that is emotive as, if not well handled, patients and their relatives may feel that they have been unfairly denied a treatment. Terminology is changing from DNAR (Do Not Attempt Resuscitation) to DNACPR (Do Not Attempt Cardiopulmonary Resuscitation) as this order specifically relates to the one treatment (CPR) and not other forms of treatments and resuscitation, such as fluid resuscitation. Current guidance in the UK comes from a joint statement by the British Medical Association, the Resuscitation Council and the Royal College of Nursing [13]. If no CPR decision has been made and the patient’s wishes are unknown, the presumption should be in favor of CPR. The exception to this is in patients in whom attempting CPR would be clearly inappropriate; for example, a patient in the final stages of a terminal illness where death is imminent and unavoidable but for whom no formal DNAR decision has been made. CPR under these circumstances is not a realistic treatment option for the patient’s condition, and is both futile and inappropriate. If it is felt that CPR would not re-start the patient’s heart and breathing, then CPR should not be attempted. A patient does not have to be informed of a decision not to attempt CPR but should be informed of the severity of their condition. A more useful discussion may focus on the severity of their illness, the fact that they may be approaching the end of their life and that you would not do anything to unduly prolong this. However, any further questions the patient may have should be answered honestly and com­passionately.

As with all treatments, there is likely to be a large group of patients in the middle where the likelihood of CPR working is unknown. If it is possibly a treatment that may benefit the patient, but you are not sure that this is the case, you may wish to discuss it with the patient to ascertain their wishes. This does not have to be phrased “do you want to be resuscitated if your heart stops?” but rather should be a discussion about their expectations of their condition and what they would want should anything happen unexpectedly. If the patient is deteriorating progressively and is in the dying phase of the disease, then CPR is not likely to be a feasible treatment and should not be offered as an illusory option.

One of the key reasons to identify that a patient is reaching the end phase of their illness is that it enables us to plan ahead and to deliver care that is consistent with a patient’s wishes. Key to this is addressing current problems, but perhaps greater skill is required by the healthcare team to anticipate and plan for future problems. Decision making in this situation takes a number of forms and must comply with the legal and ethical frameworks of individual countries:

Although these can be patient or professionally driven, they work best when done in partnership.

Advance Care Planning is a voluntary process by which patients discuss their future wishes [14]. This is done in the anticipation of a future deterioration in a person’s condition in case they lose the capacity to make those decisions as they arise. Many patients welcome this discussion, but others will not wish to participate. In the UK, the Mental Capacity Act indicates some legal options which patients can take:

In addition to the legal options, many patients prefer a less formal approach. Some will be happy simply to discuss what is likely to happen, think about the future and their choices, but not wish to do anything more. Others will prefer to record some of those preferences in the form of an Advance Care Planning document or Advance Statement.

Advance Statement– This is a statement reflecting an individual’s preferences and aspirations. It can help health professionals identify how the person would like to be treated and record past, present, and future wishes. It is the documented result of an Advance Care Planning discussion. Crucially it is not legally binding, which means that healthcare professionals need to use their judgment in applying the values in the document to their decision making. For patients, this fact overcomes a fear that they may commit themselves to a decision which they may later regret. A powerful aspect of an Advance Statement is that it enables views to be communicated, checked, clarified, and then shared with others.

The sorts of issues that patients might include in an Advance Care Planning discussion are:

When a patient’s condition deteriorates, the loss of control experienced can be overwhelming. Involving them in decision making restores some control over events. Literature in this area suggests that respiratory patients seldom get the chance to have these discussions before emergency situations arise and that they would welcome such discussions [16]. It is important to recognize that Advance Care Planning decisions only apply if a patient loses capacity. While a patient has capacity they should be consulted. Equally patients change their minds, and care should be taken in interpreting plans and updating them. Useful training modules on Advance Care Planning are included on the e-learning End of Life Care website [17].

Advance Care Planning is a voluntary process that is dependent on patients wishing to plan for anticipated changes in their condition. Whether that takes place or not, healthcare professionals need to have clear management plans, which anticipate and address potential problems.

The most straightforward option is to simply have a management plan agreed between primary care, secondary care, and the patient to address some of the following:

A number of specific tools are emerging to aid this process:

An Emergency Healthcare Plan is likely to be useful in managing a specific anticipated problem with a treatment plan. A Treatment Escalation Plan may be more helpful where a number of potential problems may arise, and guidance is required as to which specific treatments may be of benefit to a patient. Importantly clinical management plans, Emergency Healthcare Plans and Treatment Escalation Plans, are advisory plans and should guide clinical assessment and judgment, rather than replacing it. All of these approaches should include patients where possible in joint decision making and be consistent with any Advance Care Planning discussions.

Both patients would benefit from Advance Care Planning discussions. Both may benefit from making Advance Statements if they have particular preferences. If Mr Brown wishes to make clear decisions to refuse certain treatments, an ADRT form may be helpful. This ADRT may cover most clinical scenarios if well written, but cannot ask for specific treatments. Both patients would benefit from clear clinical care planning. In particular, Mrs Smith with her frequent exacerbations would benefit from the medical team considering how further exacerbations should be managed. Treatment escalation planning, an emergency healthcare plan, or simply a clinical management plan may all be helpful in managing an acute deterioration.