Chapter 15

End-stage respiratory diseases and respiratory support

Paola Pierucci¹ and Annalisa Carlucci²

¹Dept of Respiratory Medicine, Concord Hospital, University of Sydney, NSW, Australia. ²Pulmonary Rehabilitation Unit, IRCCS Fondazione S. Maugeri, Pavia, Italy.

Correspondence: Annalisa Carlucci, IRCCS Fondazione S. Maugeri, Via S. Maugeri 10, Pavia 27100, Italy. E-mail: annalisa.carlucci@fsm.it

The care of imminently dying patients unavoidably creates emotional and clinical challenges to the supporting team surrounding the patients and their families [1–3]. Training and experience in EOL care have now received appropriate recognition with the institution of palliative care as a specialty [4, 5]. However, much more remains to be done in order to improve the care of non-cancer patients who are dying, and to reach the goal of a higher standard of care that is already part of the routine care of people with advanced cancer. In fact, education in the assessment and management of the symptoms of end-stage respiratory diseases is needed as each of us as specialists face the potential death of our patients [6]. We therefore aim to review the current literature about the care of patients with end-stage respiratory disorders.

Dying from end-stage respiratory diseases

In 2012, the World Health Organization stated that COPD was the third leading cause of death globally, killing 3.1 million people [7]. A comparison of data over the past decade has shown no change in the number of people dying from COPD between 2000 and 2012, while a significant improvement was noted for the first two leading causes of death: ischaemic heart disease and stroke [7]. In addition, more than 50% of people affected by CRD live in low- and middle-income countries or deprived populations where whole populations are exposed to risk factors over their entire life span [7]. This poses questions on the real magnitude of the problem, as these numbers may be underestimated. The conclusion is that COPD-related deaths are expected to increase in the years ahead [7]. Interestingly, to date, only a few studies have focused their research on the care of people dying from respiratory diseases [8–12]. To date, the majority of research has explored populations with cancer, including lung cancer. As expected, the last hours or days of patients’ lives affected by respiratory diseases are usually characterised by several symptoms common to other pathologies: breathlessness (dyspnoea), fatigue, respiratory secretions (death rattle) and anxiety. However, delirium, confusion, loss of consciousness and severe pain are also experienced. Furthermore, depression and fear of imminent death appear to have a significant role in the complex picture of this group of dying people [8–11, 13–16].

Among patients with end-stage respiratory disorders, and in COPD patients in particular, breathlessness is the most prevalent symptom, affecting between 90% and 95% of people [13].

Over the last few years, many studies have tried to define breathlessness in patients with CRD. Thus, breathlessness can be further characterised as chronic, episodic or a ‘breathlessness crisis’ [6, 17, 18]. Chronic breathlessness persists despite treatments directed to address the underlying pathology, and is frequently encountered in patients affected by chronic cardiopulmonary diseases and lung cancer [17, 19]. A recent systematic review of the use of systematic opioids in COPD concluded that there was moderate benefit that was delivered safely in this population. The role of nebulised opioids required further research before it could be considered standard therapy [20]. Episodic breathlessness is defined as intermittent, short-term worsening of breathlessness beyond the usual chronic breathlessness that this patient type reports [18]. When episodic breathlessness episodes were observed in different patient populations, they were found to have a variable duration, being on average longer in people with COPD compared with people with lung cancer, with the majority of episodes lasting less than 20 min. These findings have opened a new line of enquiry as to how best to palliate this pattern of breathlessness, where current therapies may be inadequate, given the time until their onset of action [21]. A breathlessness crisis is, by definition of the American Thoracic Society (ATS) ad hoc committee, breathlessness near to death [6]. This separate entity is defined as “sustained and severe resting breathing discomfort that occurs in patients with advanced, often life-limiting illness and overwhelms the patient and caregivers’ ability to achieve symptom relief”. Using this definition, a breathlessness crisis embraces three main issues: acute worsening of the experience of breathlessness, a psychosocial/spiritual patient response, and a chaotic setting when sometimes caregivers are too overwhelmed to respond optimally. Not unexpectedly, patients will experience this as a distressing event, which in itself may worsen breathlessness, anxiety and fear, and may potentially worsen a range of other nonrespiratory symptoms. Hence, the challenge is to try to objectively measure a patient’s discomfort, believe their assessments and respond to them appropriately [6, 10, 22–24].

The use of respiratory devices (e.g. oxygen mask, endotracheal tube, NIV mask, humidifier) can complicate things further in these patients. It also needs to be remembered that, when caring for people who are dying, the clinical scenario can change very quickly [6, 10].

Clearly, in the last days of life, it is highly relevant for the purpose of accurately assessing patients’ breathlessness to distinguish between cognitively intact patients and those who are not, as different measurement tools will be necessary.

There are several tools to assess breathlessness in cognitively intact patients with chronic advanced disease. Usually, the VAS, NRS and modified Borg scale (mBORG) offer good available outcome measures, and they are the most commonly used in clinical practice [25, 26]. The VAS and NRS are used to evaluate a characteristic or attitude that is believed to range across a continuum of values, and both have been used to assess breathlessness. The NRS has been shown to be a more repeatable measure than the VAS, which is usually used for within-subject repeated measurements rather than for comparison between different patients, or between groups of patients. The mBORG scale, instead, was initially conceived to assess the intensity of exertion during exercise in healthy subjects, and was then modified and utilised to identify the intensity of breathlessness in patients with chronic lung disease; notably, it has the advantage that it can be used over the phone [19, 25, 26].

In theory, identical physiological changes that trigger distress in the patient with intact cognition will then produce similar distress when the patient experiences declining cognition. It should be noted that an inability to report symptom distress does not mean that the person is not experiencing suffering. This is of particular concern for symptoms such as breathlessness that are subjective. Some researchers have explored the topic and have proposed valid alternative measurement scales to quantify end-stage breathlessness in the context of impaired consciousness [27, 28]. These studies have clearly stated that, during these settings, a “yes” or “no” answer to the question “Are you short of breath?” may be the best guide to palliation, as trying to grade intensity may cause more distress. Observation and close monitoring of worsening signs of respiratory distress may be useful in this setting. A patient’s family may also be of benefit at these stressful times [28].

CAMPBELL et al. [29] have provided a Respiratory Distress Observation Scale. This scale is a behavioural assessment tool that focuses on eight parameters: heart rate, respiratory rate, accessory muscle use, paradoxical breathing pattern, restlessness, grunting at end-expiration, nasal flaring and a fearful facial display. Each parameter is scored from 0 to 2 points and the points are summed. Scale scores range from 0, signifying no distress, to 16, signifying the most severe distress. The purpose of this tool was to cover the gap in the knowledge of how to assess patients near to death with impaired consciousness who were vulnerable and unable to self-report breathlessness. Patients with neuromuscular damage and people experiencing locked-in syndrome or severe neuromuscular chest disorders are not suitable to be evaluated with this scale [29].

As mentioned previously, the ATS introduced in 2013 the concept of a breathlessness crisis, which highlights that respiratory symptoms play a key role in the last of days of life. In more detail, the consensus states that an important part of the problem is to address efficient communication, and care coordination. The COMFORT approach is an effective mnemonic tool offered, where C=call for help and calming voice and approach to patients and care givers; O=observe closely and assess breathlessness for ways to respond; M=medications to be tried; F=fan to face, which may decrease shortness of breath; O=oxygen therapy as previously found useful; R=reassure and use relaxation techniques; and T=timing and intervention to reduce breathlessness; work together, reassess and repeat.

An important part of the approach is not to underestimate the profound psychosocial downstream impact that breathlessness has on the quality of life of patients and their families. The ATS consensus stresses the point of maintaining a holistic approach in support of both patients and their families [6].

In this context, the One Chance to Get it Right document from the Leadership Alliance for the Care of Dying People [30] defined five priorities of care: 1) the possibility that a person may die within the coming days and hours is recognised and communicated clearly, decisions about care are made in accordance with the person’s needs and wishes, and these are reviewed and revised regularly; 2) sensitive communication takes place between staff and the person who is dying and those important to them; 3) the dying person, and those identified as important to them, are involved in decisions about treatment and care; 4) the people important to the dying person are listened to and their needs are respected; and 5) care is tailored to the individual and delivered with compassion, with an individual care plan in place.

DAVIS and TOMAS [31] reflected that: “No tool, irrespective of how well created or intended, could or should replace a values-based practice attending to a person, and the needs of his or her personhood.” This article identified 10 facets of personhood to be considered at the EOL: spirituality, symptoms, expectation, emotions, legacy, sustenance, individuality, interaction, family, and dignity of self and others. Once again, this puts the accent on the global meaning of the word “care”, which should never be discontinued, although other treatments may be. Moreover, the authors invoked the sunrise of the “professionalism” era and the sunset of the “paternalism” era. They suggested that, the sooner more literature on these topics appears, the sooner the paternalism attitude should be abandoned, so that enough space can be offered to education and professional standardised practice [31].

A recent Cochrane review also explored the effect of EOL care practice [32]. In this review, the use of an EOL pathway was compared with no pathway, as well as the use of one EOL pathway compared with another EOL pathway. Only one RCT was found, as none of the other studies met the inclusion criteria. The selected study by COSTANTINI et al. [33] studied the Liverpool Care Pathway in eight Italian palliative care units, studying a population of people with cancer only [33]. This pathway, currently used in medical studies, showed no difference in key parameters between services that did and did not use the pathway. New RCTs, as suggested by the review’s authors, will need to stratify participants in order to embrace the different care settings where these patients are cared for: emergency medicine, palliative care, intensive care, and general and specialist medicine.

Ongoing challenges

Supported breathing

The use of supported breathing aids in care of the dying with otherwise untreatable respiratory discomfort remains controversial. NIV has been suggested to be potentially useful during palliation as a measure to maximise comfort and minimise distress [34]. To date, only a small number of studies have addressed this topic. Although focused mainly on people with end-stage cancer, the use of NIV has shown some benefits. In fact, in a pilot study, it was demonstrated that its use in patients affected by end-stage solid cancer complicated by acute respiratory failure is feasible and, in a proportion of patients, is effective in providing a rapid improvement in breathlessness [35].

In a more structured, multicentre RCT by NAVA et al. [36], which compared oxygen therapy with NIV in people with end-stage solid cancers, NIV reduced breathlessness and respiratory rate more quickly, with reduced morphine doses administered. In particular, when looking closely at the subpopulation of people with hypercapnia before applying NIV, these results reached statistical significance [36].

However, the use of NIV for pure palliation in people with non-cancer respiratory diseases is less certain. Before any decision making, as physicians, we should always refresh ourselves about the goal of care: primum non nocere (“first, do no harm”). Indeed, an inappropriate use of NIV in certain contexts could potentially mean an increased use of medical resources, prolongation of the dying process and intensification of suffering. In a recent document, the contribution that NIV could offer as a useful palliative tool to alleviate the burden of end-stage respiratory distress was outlined [34]. This requires active involvement of the patient and their family in decision making, often in more than one meeting with clinical staff [6]. Sometimes, NIV should be considered to relieve respiratory distress. This tool, by applying an inspiratory support, might temporarily assist fatigued respiratory muscles and reduce CO₂, thus allowing patients to breathe unsupported for the remaining time of their life [34–37].

Oxygen therapy

The use of oxygen in care of the dying has been explored in a few studies, with controversial results, in a small number of patients who were diagnosed with cancer or other life-limiting illness [38–44]. Two of these studies established that both oxygen and air administered intranasally improved the mean sensation of breathlessness for patients with advanced cancer. Notably, oxygen saturation measures did not correlate with ratings of breathlessness, which is in keeping with the knowledge that breathlessness in advanced cancer is the expression of multiple sensations and experiences, and is not simply related to oxygen tension [42, 44]. Moreover, LISS and GRANT [45] made an interesting point in a study in COPD patients. They showed that, in a population of COPD patients with mild hypoxia at rest, there was no breathlessness improvement with the use of supplemental oxygen when compared with the use of simple air [45]. Only one study, by CAMPBELL et al. [43], has specifically addressed the topic of using oxygen support in patients near to death. Their study sought to investigate whether, during their last days of life, patients with a wide range of life-limiting illnesses would benefit from oxygen flow compared with simple air flow or no air flow. 78% of patients involved in the study were affected by respiratory diseases (COPD, lung cancer or pneumonia) and 46% of all patients were already unconscious. Their respiratory status was assessed via the Respiratory Distress Observation Scale [29]. The authors concluded that, when the patient is comfortable and near to death, no further support is required: neither initiation nor continuation of oxygen therapy. Moreover, no significant changes in respiratory comfort were noticed over time when changing gas and/or flow conditions were applied. Three patients required oxygen after its withdrawal because of respiratory distress. Thus, most patients do not benefit from oxygen when imminently dying [43].

Another study showed a potential benefit from air flowing on to the face in the late stage of disease, and this could possibly be related to trigeminal nerve stimulation, thereby relieving breathlessness [46]. Following this idea, two different studies have explored the use of a hand-held fan directed towards the face as an aid to reduce breathlessness in people at the EOL [47, 48]. With no measurable harm, the use of a small battery-operated hand-held fan may offer good palliation to many people with breathlessness.

Recently, another relatively new system has found an application in people who are imminently dying. Humidified high-flow nasal oxygen (HFNO) is already known to reduce respiratory rate and the work of breathing. HFNO was shown to perform better than oxygen alone in do-not-intubate patients [49, 50]. Despite these promising results, the possible role of HFNO in people who are actively dying remains to be explored fully.

Withdrawal of mechanical ventilation

Ever since mechanical ventilation (MV) was first used, the question of when to stop it, if not successful, has been important [51]. Despite many research groups around the world trying to generate guidelines on this delicate topic, there is still a great variety of clinical approaches and uncertainty on how to proceed [6, 23, 52–54]. Many studies have pointed out the disparities of practice within different countries and within the same country between different ICUs. As such, there is no consensus, with factors such as economic, cultural, religious and legal differences, as well as personal attitudes, having to be taken into consideration when approaching this topic [53–62].

When patients are assessed for potential withdraw of MV, the first and most important issue is whether the patient is competent or not. This term refers to the patient’s ability to fully understand, decide and communicate his or her decision regarding his or her own health after being provided with comprehensive information and prognosis. If the patient is competent and decides to forgo MV, then a psychiatry consult may be requested in some clinical settings, given that patients in this stage and location may experience depression, sleep deprivation and psychosis due to the surrounding environment or their medications. To respect the patient’s autonomy is a fundamental ethical principle supported by ethical codes of national organisations, as well as from consensus statement of healthcare professionals [63–66]. However, despite the importance of the patient’s decision, the family’s support should be always sought for the patient’s decision [67, 68]. In the case of a patient who is not competent, local laws and regulations will need to be followed. A frank but sensitive discussion is always required in this setting. For example, it is extremely relevant that, over the time spent with the patient and family, a clear assessment on whether or not to provide cardiopulmonary resuscitation should be gained. Also, different end-stage respiratory patterns after extubation should be described. Furthermore, the presence of airway secretions (death rattle), a protruding tongue and collapsing airways should be carefully considered as possible scenarios by the physician and the nurses caring for the patient. Families must be reassured that every possible measure will be put in place by the team to avoid the patient suffering [51–53, 63, 69].

Ideally, after a family meeting, a relatively short time frame should allow full assimilation of the information before starting any withdrawal procedure. Withdrawal from MV consists of discontinuing the breathing support to allow a so-called “natural death”. MV may be withdrawn gradually (terminal weaning) or immediately. Currently, there is no right or wrong approach, and physicians are usually guided by personal experience, often favouring one over the other, based on the patient’s status [52, 63]. Terminal weaning is usually achieved over a variable period, varying from hours to days. Usually, once there is an adequate environment and sufficient sedation to maintain the patient’s comfort during the entire procedure, there are a few steps to follow. Initially, there is usually a gradual reduction in the positive end-expiratory pressure, as well as pressure support. Meanwhile, the inspiratory oxygen fraction (F_IO2) should be reduced to room air. Close monitoring is essential to avoid a patient’s distress at any time. Adjustment of sedation might be required during the process. Most patients will have died when they are no longer receiving any positive-pressure ventilatory support (which means when ventilator rate and pressure support rate is zero). If not, the mechanical ventilator is disconnected and the patient may be extubated. If the plan is not to extubate the patient, then further options include the connection to a T-tube or monitoring for signs of respiratory distress or discomfort, and addressing accordingly [53, 70]. After the patient’s death, acute grief support should be a priority. Debriefing of the caring team should always be performed afterwards [53, 65].

On the same topic, CAMPBELL et al. [71] recently published a pilot study for the feasibility of a nurse-led algorithm for terminally ill patients undergoing MV withdrawal. The study was designed as observational and prospective, with two groups of patients: “intervention (algorithmic process) compared with unstandardised usual care with at least 3 time periods of measuring patient respiratory distress”. There is no mention of the patients’ underlying diseases, and the number of patients involved was relatively small (14 patients in total: six intervention and eight usual care); however, the baseline characteristics were similar for age, gender, arterial oxygen saturation measured by pulse oximetry (S_pO2)/F_IO2 and Simplified Acute Physiology Score. This study demonstrated the feasibility of a nurse-led, multistep assessment that involved patient distress, medication use (in the intervention group, morphine was preferred to benzodiazepines), withdrawal method and extubation decision (with a cuff leak test done in all intervention patients) compared with a single-step approach conducted in the standard group. Significant differences were found between the groups for medications use, with benzodiazepines used more in the control group, and the onset of stridor in some of the control group’s patients. Despite the fact that the numbers were small, this study is the first to have explored a potential nurse-led, multistep assessment plan. Further multicentre studies will be required to assess the matter in more detail.

Medications

There is still much controversy in the literature related to: 1) the timing of medications administration (anticipatory dosing or sedation in the terminal stages); 2) the types of medication that should address all the respiratory (excess secretion, death rattle, breathlessness, increased respiratory rate and stridor) and nonrespiratory (pain, vomiting, delirium, anxiety and fear) symptoms; and 3) dosing: large variations in doses have been published from various clinical settings (ICU, paediatric ICU, medical ICU, general ward and palliative care ward) [6, 16, 52, 53, 62, 69, 70, 72–79].

As mentioned previously, there is still a wide variation in practice in the medications used prior to and during withdrawal of MV. This reflects the lack of consensus on the topic and the urgent need to investigate further the pathophysiology of the mechanisms of symptomatic distress related to withdrawal.

Palliative care consultation

The palliative care specialty is now a well-recognised entity inside most hospitals around the world (e.g. www.capc.org/) [80–83]. In fact, palliative care has been proven to be effective in meeting the needs of bereaved family members whose relatives have died in the acute care hospital [84].

However, the recent literature indicates that there is still reticence in consulting a palliative care team, and within a suitable timeframe [74, 85, 86]. This is particularly true in nononcology specialties, such as respiratory medicine [85]. To counter this practice, there is a growing body of evidence that clearly shows how important palliative care referral is and how to choose the right time for such a referral. This is because palliative care aids communication and appropriate support to the families and improves the care of dying patients. This includes helping to determine when to cease futile treatments and implement appropriate EOL medication orders. In a recent study focused on patients in medical ICUs, it was shown that palliative care consults were associated with a reduced hospital length of stay and, as a consequence, reduced costs of care as well [80]. However, this result was obtained through better allocation of resources including fewer invasive procedures, not through hastened death. This demonstrated better patient care and better support for families [74, 80]. Moreover, as a collateral benefit, involvement of palliative care allows for modelling of good EOL care for nurses and doctors from other clinical teams, thereby providing ongoing education and support [83, 87, 88].

Additional considerations

Ethics in care of the dying

“No right is held more sacred, or is more carefully guarded, by the common law, than the right of every individual to the possession and control of his own person, free from all restraint or interference of others, unless by clear and unquestionable authority of law.” [65, 89]

“The task of medicine is to cure sometimes, to relieve often, and to comfort always.”

Ambroise Paré (16th-century French surgeon).

Primum non nocere (“First, do no harm”).

These three sentences sum up the three most important medical ethics patient principles: autonomy, beneficence and nonmaleficence. Autonomy is the right of an individual to make decisions regarding his or her own body. Beneficence refers to achieving the best outcomes by acting in the patient’s best interests. Nonmaleficence can best be explained by the Latin quote primum non nocere, which translates as “first, do no harm”. However, in medical care, autonomy is often balanced against paternalism. The latter defines a situation in which healthcare professionals exercise unilateral authority over patients, acting with a patient as a father would with a child. This is based on a sense of superiority of understanding, knowledge, experience or training [65].

But is it true that we physicians are really more knowledgeable about the topic? What do we know about breathlessness in a person who is in the terminal phases of life?

Maybe the first step should be to try to clarify the pathophysiology of breathlessness. HALLENBECK [76] and RADY and VERHEIJDE [90] tried to address this question, but they ended their articles with the awareness of a lack of knowledge and advised “the practicing clinician to consider what physiologic mechanisms may be at work in tailoring patient-specific therapeutic plans” [90]. On the same matter, RADY and VERHEIJDE [91] drew our attention to two related ethical questions. 1) Could the withdrawal of mechanical positive-pressure ventilation harm patients despite our best intentions? 2) Is there sufficient evidence that opioids and benzodiazepines effectively suppress the nociception of breathlessness following the withdrawal of mechanical positive-pressure ventilation? These are important questions, and the answers are that we still do not know.

In their letter to the editor, RADY and VERHEIJDE [91] posed an urgent call for research on the topic. There is an urgent need to understand “the pathophysiology and biologic mechanisms of alleviating [breathlessness], as well as the cognitive-affective processing of [breathlessness], which will ultimately enable physicians to optimise EOL care and good ethical decision making”.

Spiritual needs

Respect for patients’ dignity and their spiritual needs in their last days of life offers the physician and team a unique demand for consideration, especially when someone is facing the EOL.

SULMASY [92] described in depth the origin of the word dignity. He states that Kant, in The Metaphysics of Morals [93], writes: “The respect I bear others or which another can claim from me (osservantia aliis praestanda) is the acknowledgement of the dignity (dignitas) of another man, i.e. a worth which has no price, no equivalent for which the object of valuation (aestimii) could be exchanged.” He also states: “Humanity itself is a dignity” [93]. This Kantian idea of dignity was eventually borrowed as a Catholic Christian thought [92, 94]. This explains how the word “dignity” transcends a pure religious content to embrace a more universal value that should always remain the physician’s first priority.

Facing death offers the opportunity for all human beings to raise questions about one’s worth. Human dignity is an intrinsic concept, not bound by physical or cognitive dimensions. SULMASY [92] also stated that respect for the person’s intrinsic dignity also requires exploration of his or her spiritual needs, potentially allowing people the ability to grow further spiritually: “Death, indeed, has a powerful way of making clear what is really important, what really matters.” Despite the value that patients put on faith or beliefs in their life, it is undoubtedly challenging to assess spiritual needs when they are dying. There are poor tools to evaluate unmet spiritual needs [95]. One tool to assess such needs has been validated only in cancer patients [96]. A proper spiritual screening, spiritual history, in-depth spiritual assessment and actively listening to patients’ story have been suggested as part of the normal routine for dying patients. However, no consensus has yet been achieved in the palliative care community, reflecting the multifaceted aspects of this problem [95]. Other key factors to take into account are the clinical and cultural features of the population in which the outcome measures have been validated [97].

Spiritual needs, however, ought to be valued not just in the one-way direction of patient to physician. There are, in fact, many studies that have clearly underlined the strong relationships that tie physicians and nurses involved in care of the dying to their spirituality through their patients’ care. Inevitably, caring for people who are dying may allow healthcare professionals, at any level, to ask themselves about the meaning and purpose of life at the same time that their patients are pondering these questions. This offers a unique opportunity to cultivate a deep sense of spirituality [1, 95, 98, 99].

Patients’ and families’ perspectives

Interestingly, patients affected by end-stage CRD often have a limited understanding of their stage of disease and the fact that death may be near. This occurs for many concomitant reasons: little or no EOL communication between respiratory care providers and patients about death and dying, poor advanced care planning and, at times, physicians’ paternalistic behaviours [9, 12, 36, 100].

Something to consider carefully is the attitude of the relatives towards care of the dying. In fact, discrepancies have been highlighted between how people wish to be treated and how they believe others should be treated. We now know that patients with end-stage respiratory diseases may face a sudden fatal exacerbation. If this leads to intubation, patients may be unable to express their wishes, leaving the decision to family members (who should be asked what the patient would want in these circumstances) or physicians [101]. In these scenarios, relatives have shown the tendency to request more active treatment for their loved ones than the patient themselves would want [102]. Furthermore, surrogates are more likely to request life-prolonging interventions than patients [103]. They may also take decisions based on their own values, beliefs and, most importantly, insecurities [104, 105]. Specific training of caregivers in the field of care of the dying, by providing adequate family information and support, will play a key role. Advance directives, although limited in their influence on EOL decisions, may help bridge the gap between the wishes of patients with end-stage respiratory diseases and their relatives [36, 106–108]. Future studies to improve decision making should focus on enhancing communication and promoting more comprehensive advance care planning [82, 109].

Conclusion

In summary, despite all the recent attention and the studies that have sprung up on the topic of the last stages of life, there is much ahead that needs to be explored. EOL care is not synonymous with end of care. Patients with end-stage respiratory diseases deserve proper assessment and support akin to the care given more widely to people with advanced cancer (table 1). It is the commitment of every clinician to provide the best care for those who suffer, especially at such a vulnerable stage of their life. There is a need to promote further research to optimise patient’s comfort and to reduce their fear of dying.

Stay updated, free articles. Join our Telegram channel

Join