Palliative Care in Advanced Chronic Obstructive Pulmonary Disease

Abstract

There is a need to look at advanced chronic obstructive pulmonary disease in the eyes of palliative care. Many times, the eyes that are used may not reflect the objective of employing palliative care but rather an afterthought. It is, therefore, essential to look at how we can maximise professionalism in working as a team to provide palliative care. Palliative care should be built into the available professions and not introduced as separate care so that it improves the overall care but not replacing it. The chapter takes one through the commonly encountered problems facing a patient with advanced chronic obstructive pulmonary disease. It further raps this with the focus on a multidisciplinary approach in a setting of shared decision-making.

1. Introduction

We introduce this chapter with a passage from a qualitative study published by palliative care experts. The authors summarised their findings with these statements, “In order to help patients to improve disease awareness, to accept their life situation and to improve their reduced quality of life, patients may benefit from the early integration of palliative care (PC), considering its multiprofessional patient-centred and team-centred approach” [1]. Palliative care means a lot to the patient with advanced chronic obstructive pulmonary disease (COPD). Since 2009, palliative care in Uganda has grown in volume, quality, and geographic reach. An important epidemiologic transition has occurred when non-communicable diseases have replaced HIV/AIDS as the leading diagnosis for patients receiving palliative care [2]. The challenges that these patients go through are worth accepting, targeting, and improving through the multidisciplinary care team offered in a palliative care setting.

Chronic obstructive pulmonary disease (COPD) has been defined by the Global Initiative for Chronic Obstructive Lung Disease (GOLD) as “a heterogeneous lung condition characterized by chronic respiratory symptoms (dyspnea, cough, sputum production) due to abnormalities of the airways (bronchitis, bronchiolitis) and/or alveoli (emphysema) that cause persistent, often progressive, airflow obstruction”. It is diagnosed by performing spirometry, where a device measures the lung function. The forced expiratory volume in one second (FEV1) and forced vital capacity (FVC) ratio is calculated. A ratio less than 0.7 is indicative of an obstructive pattern. Spirometry measurements must persistently indicate obstruction, that is, consistent even after the patient is given an appropriate dose of a bronchodilator.

Palliative care is a multidisciplinary approach employed in health care. It has often been left to a few, but many who would have helped implement it mind other businesses [3]. The implementation gap must be sealed by showcasing the beauty of a multidisciplinary approach. Nonetheless, the typical current situation is the deception of fragmentation of care, being every day a ‘hole in a doughnut’ that the patients don’t deserve. A team approach where patient-centred care is provided would be an outstanding achievement if persistently implemented. Palliative care avoids and alleviates the suffering of patients and their families by finding ways to care for their pain and other issues. The standard methods employed in palliative care include early detection of life-threatening illnesses, focusing on accurate diagnosis, and ensuring the use of effective treatments for the identified problems. The dimensions of the patients’ issues in palliative care may be physical, psychosocial, or spiritual [4].

This chapter discusses the approach to handling palliative care among advanced COPD patients. Advanced COPD has been used in this chapter to refer to the COPD patients in Global Initiative for Chronic Obstructive Lung Disease (GOLD) grades III/IV as diagnosed by spirometry, and also the patients at “E” grading of the ADE GOLD classification, who are COPD patients with frequent exacerbations/hospitalisations in the previous one year at their time of presenting to the health care provider.

The sections of this chapter that follow will lightly explain the roles of the different players in the multidisciplinary approach in a palliative care team caring for a patient with advanced chronic obstructive pulmonary disease. The list presented in this chapter is not intended to show all needed members but instead gives a basis to start a functional team at a hospital. The chapter begins by mentioning the common symptoms or problems in palliative care for advanced COPD and concludes by explaining an active palliative care team for the advanced COPD patient.

2. Dyspnea management

One of the most distressing symptoms among Chronic Obstructive Lung Disease (COPD) patients is dyspnea. Dyspnea is an experience of abnormal, more significant effort required to breathe, the chest feeling heavy, air hunger, or gasping that COPD patients encounter [5]. This comes at any time and may be severe at some moments or consistently. The patients with dyspnea are at different severity levels.

The standard way to stratify the patients with dyspnea is using the Global Initiative for Chronic Obstructive Lung Disease (GOLD) classification. The classification considers the frequency of severe episodes of dyspnea and the associated disability in a patient’s life.

This classification has been called the ADE classification [5]. The classification focuses on describing dyspnea in relation to forced expiratory volume in one second (FEV₁), the number of hospitalisations exacerbations in a year, and how the dyspnea affects their life.

The assessment of dyspnea is thus not only an issue of the presenting challenge but should involve having a good knowledge of the patient’s past dyspnea experience for at least one year. The patient’s experiences should then be categorised to make a treatment approach that will try to predict breathing challenges.

Having assessed the patient then, the treatment is prescribed depending on the individual patient’s needs. The standard treatments include:

• Oxygen therapy usually prescribed for long-term use

• Bronchodilators, e.g. long-acting beta-agonist (LABA) like salmeterol, formoterol, and olodaterol; long-acting muscarinic receptor antagonists (LAMA) like tiotropium, aclidinium, umeclidinium, and glycopyrrolate

• Steroids, e.g. budesonide, beclomethasone, fluticasone

Other treatments target complications of COPD such as pulmonary embolism, e.g. use of anticoagulants; muscle weakness, e.g. pulmonary rehabilitation; stopping or getting alternatives to respiratory depressant drugs.

One of the key parts of the treatment of dyspnea in palliative care is patient empowerment. The patient needs to be empowered to benefit from the treatment. This may not apply to patients who are unconscious; thus, only their family members are empowered with knowledge in such instances. Patient empowerment starts with understanding the knowledge of the patient pertaining to the treatment prescribed. There is no need to teach a patient what they already know. Rather, effort should be focused on what they need to learn or understand better. An example of a knowledge gap may be how to use the medicine, such as the inhaler technique. The nurse or doctor thus goes ahead to teach the patient how best to use an inhaler. The earning process should be continuous rather than planned for counted times. This allows improvement throughout all interactions with the patient. Empowerment should be enhanced by using materials that the patient can access by themselves such recorded audio or video materials.

All patients who get exacerbations need to get reviewed by a respiratory physician or pulmonologist so that there is improved care for the added needs of the patient. In Uganda, we have a few internal medicine physicians who subspecialise in respiratory medicine (respiratory physicians). However, we often have general internal medicine physicians (with qualifications of master of medicine internal medicine) serving at various hospitals. Several have experience treating COPD patients and are thus a great resource. These usually prescribe guideline-directed treatments for COPD patients who get exacerbations. The patients are aware of their symptoms and are best at describing them to the physician. The patients are thus also experts in their illness. Dyspnea is most of the time chronic, and the patient needs to learn to also minimally adjust treatment to improve relief even before the pulmonologist sees them. The patient should be in control of up-titrating the bronchodilator and or/steroid doses. The patient empowerment sessions should guide the patient on safe practices for changing drug doses to relieve dyspnea as they wait to see their pulmonologist. This underscores the need to have repeated assessment and empowerment on how to use the prescribed treatment.

The use of morphine may be thought to be controversial among COPD patients. It has been used to treat refractory dyspnea [6]. The physician may not be willing to prescribe it for COPD patients due to its respiratory depression side effects. However, whenever prescribed, patient empowerment should be done so that the patient can identify the side effects and, if necessary, stop its use early. Morphine provides treatment for both dyspnea and pain in selected patients with advanced COPD, but this requires support from family members to be effectively utilised [7].

3. Role of pulmonary rehabilitation

COPD is a chronic disease. This allows for several processes to take place. Due to oxidative stress, genetics, hypercapnia, acidosis, metabolic problems, dietary irregularities, medicines, co-morbidities, and ageing, COPD reduces muscle mass. Common muscle remodeling leads to lower exercise capacity and impaired function.

The patient diagnosed with COPD usually needs extra assistance to be added to their physiological abilities. These assistances may come in to play when the health care team is multi-disciplinary. One of the relevant health care providers is a physiotherapist or at least the practice of physiotherapy, even if not by a registered physiotherapist.

The physiotherapist identifies the respiratory disabilities and plans how to administer the physiotherapy. The greatest challenge thus lies in the early identification of the physiotherapy needs of the patient. Delay in identifying the needs may result in wrongly diagnosing a patient to have a poor prognosis or sometimes wrong differential diagnoses.

There is, therefore, a need for the physiotherapist to be given adequate opportunities at ward rounds or outpatient respiratory clinics together with the physician to allow them understand the treatment options availed to the patient. This allows for the incorporation of pulmonary rehabilitation strategies. Pulmonary rehabilitation is a widely accepted comprehensive interdisciplinary exercise training technique.

Adherence to pulmonary rehabilitation is typically low, and obstacles include accessibility, financial constraints, a lack of enthusiasm, and the incapacity to participate in or carry out physical exercise [8].

The path to increase accessibility involves utilising the workforce that is already available. Underutilisation worsens the challenge of accessibility by preventing the availability of services. People can’t adhere to services that have restricted access. It is also paramount that awareness of the need for pulmonary rehabilitation should increase.

Pulmonary rehabilitation improves the following aspects of palliative care [9]:

• Functional capacity

• Higher treatment of dyspnea

• Anxiety, and depression

Hospitalised advanced COPD patients may need practices such as those mentioned below for their improvement: [10]

• Humidification of respiratory gases

• Chest physical therapy

• Manual or ventilator pulmonary hyperinflation

  • Manual chest expiratory compressions

  • Mechanical in-exsufflation

  • High-frequency oscillations

• Muscle reconditioning

Although rehabilitation is important, it must be known that it does not help the patient, except other interventions are concurrently instituted. The patient under pulmonary rehabilitation equally require the help of all other specialists to have improvement in quality of life.

4. Social aspects

The approach discussed above of holistic approach in the palliative care is intended to include the social aspects of the patient. The COPD patient desires to live a satisfactory life, although it is at the end of their life. According to a study in 2021, patients with COPD who had more social support had a much decreased likelihood of experiencing depressed symptoms [11]. The involvement of peers and relatives in treating COPD patients is thus crucial to getting the best outcomes.

The holistic approach covers the social aspects, such as how the patient wishes to spend time if they were well. This means that the team caring for the patient gets to know the social life of the patient and then includes the social disabilities of the patient in the diagnosis. The common mistake is failure to include the social aspect in the diagnosis of the patient, resulting in not planning for palliative care needs for the social issues.

The diagnosis may thus have additional details such as:

• Sports, e.g. watching sports events

• Music and dancing, e.g. night clubbing

• Writing activities, e.g. authoring articles

• Eating for leisure, e.g. special meals

• Touring, e.g. places to visit before death

• People groups, e.g. people that one wishes to spend time with mostly

After the diagnosis then, the next step is to allocate the responsibility to one of the caring staff. This may mean having a very inclusive caring team that does not segregate social workers. This is important because most healthcare professionals do not get adequate training in handling issues that deal with social life. The staff that may be very helpful in managing the social aspects of the COPD patient conclude:

• Social workers

• Music trainers

• Tour/travel guides

• Journalists

The doctors and nurses should also use the opportunity to learn on the job by being present during the non-medical staff interview/therapy sessions. This helps to improve how they later interact with the patient knowledgeably. The presence of the health worker in the sessions helps to create a team and strengthen cooperation among the team members. Respect should be given to the non-health worker while they engage the patient. While the help of non-health workers is welcome, the confidentiality of information must be maintained since other professionals may not be trained in handling confidential data. There should be clear roles while working with team members, and none should feel embarrassed if reminded of the boundaries that should not be crossed. Such limitations include medical prescriptions which non-health workers should not be allowed to make. The involvement of family members is the usual inexpensive way to provide social palliative care. These can sing, help with sports, exercise, write, and play with the patients. This means that choosing an available and cheap method needs to be considered so that it is provided when it is never needed. The point to remember is that the family members may also be biased about certain sports activities or may even themselves be naïve about the interests of the patient, such as writing.

5. Home care and visits

In this section, we briefly discuss the care for a patient while at home. Many patients get to a time when all the needed services can be provided at their homes. This is usually a decision taken with the help of shared decision-making. The decision to care for the advanced COPD patient at home should be a collective choice with the inclusion of the patient. The caring team should look at the pros and cons of the decision. The patient will be visited by a team of palliative care providers at their home. The decision should guarantee that there will be uninterrupted communication through the sharing of telephone contacts between either parties and precisely locating the home. The home should be located by noting the details of the neighbourhood of the patient and road access with alternative routes. All these already exist in the patient register if the patient has been known to the hospital earlier. In case they aren’t there need to document the data.

There should be caregivers with ability to respond to the daily immediate needs of the patient. This must be confirmed and the details taken so that responsibilities are clearly spelt out. The caregivers at home may be family members, friends, or those that the patient has entrusted such roles at a fee.

The palliative care team also equally identifies and gives specific roles to their hospital staff or volunteers to ensure that home visit are carried out. A system that involves periodic reports that are delivered to the hospital palliative care lead staff must be put in place. This ensures that support is continually given to the home visit staff or volunteers and quality improvement assured.

The common needs for home visits include the following but not limited to:

• Periodic assessment of palliative care problems since these change from time to time

• Offering a listening ear to share the challenging experiences

• Counselling sessions

• Bridging the gap between the staff at hospital and the team at home

• Delivering support to the patient such as medicines, e.g. nebulised bronchodilators, heart failure medicines, morphine, oxygen cylinders

• Delivering empowerment materials in any form, such as written, audio, or video

The care team should also plan for likely challenges while planning for home care. The commonly encountered problems include

• Poor adherence to the medicines and treatment prescribed.

• Meeting caregivers who don’t usually stay with the patient. These may not provide relevant information during the home visit.

• Problems that the visiting team have never handled in their practice, e.g. homicide.

• Limited resources, e.g. due to reduced funding in the recent times of the COVID-19 pandemic.

• Change of physical address without notifying the visiting team.

• Inappropriate demands from family members, such as sexual harassment.

The health system may further complicate the challenges above in a given community. The laws governing patient care, as well as resources differ from country to country. In Uganda (where the author lives currently), the resources are usually centralised at health centres, and the district health care team may not be willing to extend the services to the patients at home. This may be eased by supporting non-governmental organisations where collaborations are feasible. Such organisations should be reached out to, and early engagement in patient care at hospitals before home visits would be a wise plan.

6. Role of multidisciplinary agreement and shared decision-making

The COPD patient is usually managed under the care of an internal medicine physician or pulmonologist. Depending on the set-up at the hospital, the patient’s reviews will most of the time be scheduled by the above specialists. There is a tendency only to consult other specialists when the patient has requested or only when there is a new challenge to deal with. Such planning does not seem inclusive because it is limited and or/or depends on mainly the experience of the pulmonologist.

To improve the multidisciplinary team, the pulmonologist (who is the team lead) needs to treat the patient as a whole. Holistic management of the patient allows other specialists besides the pulmonologist to get involved in the treatment all through the care sessions.

With holistic treatment, the patients get scheduled reviews to identify the challenges that they may have in other organ systems besides the pulmonary system. Such reviews can be initiated by the pulmonologist initially seeking to involve the most common organ complication specialists.

These common complications experienced resulting from COPD that may need the involvement of other specialists include:

• Heart failure

• Depression

• Insomnia

• Weight loss

• Job loss

Specialists who may handle the above complications include

• Cardiologist

• Psychiatrist

• Nurse

• Nutritionist

• Social worker

Besides the attending pulmonologist, other specialists need to be given complete trust because of the need to have them on board all through the time the COPD patient gets hospital visits.

The role of the multidisciplinary team is to provide a comprehensive management plan. The complications of COPD may need palliative care that is beyond the capacity of the pulmonology department. An example is that of difficulty breathing. Difficulty breathing may initially be due to the severity of COPD but may at a time become a result of both the failing pulmonary system and heart failure. Such a patient may need treatments that are beyond what is usually prescribed for the dyspneic COPD patient under the care of a pulmonologist. Treatment of heart failure may be based on the ejection fraction of the patient (being reduced, mid-range or preserved ejection fraction). Optimising these treatments would be best done by teaming up with the cardiologist.

Patients who experience depression may be at risk of poor medicine adherence and may not live a satisfied life. The pulmonologist is responsible for involving the psychiatrist in the management of advanced COPD patients. Scheduling reviews or having discussions with the psychiatrist to enable both early detection and continued treatment of the depressed advanced COPD patient is crucial. Depression, if poorly managed, may result in difficulty in history taking, physical examination, and their associated failed shared decision-making. Caring for a patient who has lost hope, such as may be found among depressed patients, means caring for patients who have daily pain. Hope needs to be restored. This kind of approach that prioritises the challenges of the depressed advanced COPD patient can only be best handled while working with the psychiatrist.

Nutrition is vital for all advanced COPD patients. COPD is known to cause muscle wasting, and chronic inflammation has also been documented [12]. These issues require the adoption of nutritional care that emphasises the individual dietary needs of the patients since the needs vary. An appropriate assessment will require the involvement of a nutritionist not only a few times but always since COPD is chronic. The role of the nutritionist is to make a detailed assessment and design a long-term treatment plan for the patient. The treatment plans need to consider all other management plans that the patient has been given.

The health workers who spend the longest time with patients are usually nurses. These avail a credible place in knowing patient prognosis, adherence to therapy and reliable ways to detect patients’ needs. These are not the only reasons they are important players in the palliative care of COPD patients but rather the more obvious reasons.

The nurse is usually equipped with both the patients’ desires and the palliative care providers’ desires. They thus play a great role in finding a balance between what care to give the patient. They often inform other care providers of the details they have observed while interacting with the patients, making the care patient-centred. Ignoring, delaying, or preventing the nursing team from providing their care view may result in not having patient-centred care.

Palliative care specialists are available in many countries nowadays. This has allowed many hospitals and clinics to offer specialised palliative care services. The patients are better managed with the involvement of these professionals. The professionals are at different levels of education, such as bachelor’s, master’s or even doctor of philosophy. Some professionals are medical doctors or nurses who have specialised to be palliative care specialists.

Their presence mainly acts as a guide in decision-making. They are custodians of best practices of palliative care and thus allow for improvement in care while mentoring other health care professionals regarding palliative care services. They improve early referral to better centres regarding palliative care. Early referral can be crucial in cases requiring dialysis or ventilator support. Some difficulties in decision-making, such as when to treat or not treat using specific therapies, are better reached with the help of palliative care specialists.

Other specialists have roles besides the pulmonologist’s paths in caring for advanced COPD patients who need recognition, such as those mentioned above. There is, therefore, a need for the pulmonologist to think of making a team which is not permanent but varies depending on the individual patient’s needs.

Although the patient is seeking help, their opinions in decision-making may not be at the forefront. Patients in palliative care wish to be involved in choices affecting their treatment [13]. Shared decision-making (SDM) has its role in palliative care because it helps patients understand better their illness and improve their adherence to therapy. The caring team also needs to understand the experiences of the patient. There is a challenge of presuming to understand even when deliberate processes are not engaged. This mistake is very likely to take place if one only trusts their opinion or professional decisions without remembering that care should be patient-centred. The way to make care patient-centred involves employing shared decision-making. Some health workers fear the outcomes of patients’ opinions, thinking that it may result in poor prognoses or early death of the patient than expected. However, this is not true since the patient who seeks care already desires the best care.

7. Conclusions

Palliative care best operates at the peak of multidisciplinary teamwork. In caring for patients with advanced chronic obstructive pulmonary disease, all relevant discipline professionals need to liaise with each other, plan together, and apply interventions that are patient-centred. An approach that takes this form becomes easy to coordinate and allows time for decision-making. Patients with advanced COPD will realise better care when they receive palliative care services at all points whenever they meet healthcare professionals.

Acknowledgments

• Dr. Amandua Jacinto, MMED, MSc Palliative Care, Consultant Physician and Palliative Care Specialist, Kampala International University Teaching Hospital, Bushenyi, Uganda

• Caxton Bahemurwaki, BSc Palliative Care, Head of Palliative Care Services, Kabale Regional Referral Hospital, Kabale, Uganda

• Moureen Banturaki, Medical Clinical Officer, Bushenyi, Uganda

Conflict of interest

The authors declare no conflict of interest.