Palliative Care Education for Everybody

*Georg Bollig*

### **Abstract**

This chapter is about palliative care education for everybody including both professional health care workers and all citizens. A six-step approach to life-long palliative care education (as first described by Bollig in 2008 and published as a conference poster in 2009 and a book in German in 2010) will be proposed and discussed. The chapter will summarize the public knowledge approach to palliative care implementation (Bollig 2008) and other strategies to educate the public about palliative care. The concept of Last Aid courses for citizens will be introduced, and international experiences with this concept will be discussed. A possible combination of Last Aid courses and the compassionate community approach might improve palliative care provision in the community.

**Keywords:** Palliative care, worldwide, education, citizens, public health, compassionate communities, Last Aid course

#### **1. Introduction and background**

Our world is in constant change, and today, there is an enormous pressure by the mass media and the Internet to handle a massive amount of information every single day. To keep up with the current knowledge is therefore not an easy task. There is an increasing focus on life-long learning. This applies also to the field of palliative care and end-of-life care. Taking into account the increasing number of frail elderly people and people with demanding care needs in the future, it is obvious that all health care professionals should know how to provide palliative care and end-of-life care. But why should everybody be interested in learning palliative care when there are specialists to handle that? Due to an increased overall life expectancy, the demographic change and a growing awareness of palliative care needs of patients with nonmalignant diseases as, for example, terminal stages of heart-diseases, kidney diseases, neurological diseases, etc., an expected enormous number of people with a need for palliative care cannot be treated by specialized palliative care providers alone. In order to provide good palliative care to all in need, all citizens have to join in to help to provide palliative care for everybody in need. According to Kellehear, everybody has a responsibility of providing endof-life care for others [1, 2].

Although many people would prefer to die at home, death has moved to happen mostly in institutions like hospitals or nursing homes within the last decades. Thus, communities and health care services have to prepare for an increasing number of people in need of palliative care and end-of-life care at home and in nursing homes [3–5]. The health care systems around the world will not be able to cope with this

enormous task without an increased contribution from the public. In order to meet the needs of as many dying people as possible, the health care system has to cooperate with relatives, friends, and the whole community [1–4]. Based on these facts and thoughts, there is a need that everybody should be educated in palliative care in order to be capable of caring for seriously ill and dying people at home.

### **2. Learning palliative care throughout life for everybody**

As pointed out above, the enormous need for palliative care in the future indicates a need not only to educate health care professionals about palliative care but also to include the whole society and all citizens. First Aid and emergency care can be used as an example for cooperation of the health care system and citizens. Without the help of citizens who provide first aid, many people would die or suffer from more serious damages following a heart attack, cardiac arrest, or trauma. The example of the city of Seattle in the USA has shown that the public can be trained and motivated to participate as bystanders in emergency care [6, 7]. In Seattle, 850,000 people have been trained in cardiopulmonary resuscitation (CPR) since 1971 [6]. The crucial factors to achieve that have been public education classes where people have to attend only once for a short period of approx 1–2 hours and broad information and motivation of the public [6, 7].

#### **2.1 The public knowledge approach**

Several models of implementing palliative care have been described in the literature [8, 9]. The most common used approach uses an expert to ensure a good quality of palliative care provision [8, 9]. Based on my experience from working at Harborview Medical Center in Seattle and observations from the work of Medic I and Medic II, I have adapted the approach from emergency medicine applied in Seattle to the field of palliative care. The so-called *public knowledge approach* [7, 10–13] aims to incorporate knowledge about palliative care and end-of-life care in public knowledge that everyone should have. This should in the future become an essential part of public education in schools alongside with biology and first aid education. Palliative care knowledge for the public in palliative care can in analogy with first aid be called *Last Aid*. This expression makes it clear for most people that it includes care at the end-of-life. Many people associate care at the end-of-life and a supplement to first aid with the term *Last Aid* [14]. The public knowledge approach assists implementation of palliative care in the public and may enhance knowledge about palliative care for all health care professionals and the public. It uses lay people to make palliative care available everywhere for all people in need. The *Last Aid course* forms the educational foundation of this approach in order to enable everyone to provide palliative care in the community. It may also form an essential component of the compassionate community approach [15]. The *Last Aid course* will be described in more detail under 3.

#### **2.2 The chain of palliative care**

In analogy to the chain of survival used in emergency medicine (**Figure 1**), a *chain of palliative care* (**Figure 2**) was introduced to illustrate palliative care provision in the community. The first step is that the patient himself or others (e.g. relatives, friends, and neighbors) recognize a need for palliative care. The approach is patient-centered. As in emergency care, one contact (the emergency call) should be enough to get the level of care which corresponds to the patients' needs. If a

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*Palliative Care Education for Everybody DOI: http://dx.doi.org/10.5772/intechopen.85496*

satisfactory care within the home.

*The chain of survival (from emergency care).*

**Figure 1.**

**Figure 2.**

*The chain of palliative care.*

general practitioner or a community nurse need help to treat a patient, a palliative care specialist or a specialized palliative care team should be contacted. The patient might be admitted to a specialized palliative care ward if it is not possible to provide

This approach (**Figure 3**) includes education for the public as initial step. One important feature is the demand for multidisciplinary education for all professionals involved in palliative care. Multidisciplinary education can be used to include a team-based approach not only in palliative care provision but also already in learning palliative care. This may increase the understanding of the different views of the different stakeholders involved in palliative care provision. Unfortunately, most

education programs in palliative care for health care professionals are monodisciplinary [7]. The European Association for Palliative Care has described three levels of palliative care knowledge (A, B, and C), and educational programs have been designed for professionals (nurses, physicians, etc.) in the field of palliative care according to [16]. In order to include the public, as well as leaders and researches, the six-step approach has been modified to include six different levels. These are six steps on the ladder to education and acquisition of competence in palliative care. It is important to aim for a multidisciplinary education in order to bring the members of the future multidisciplinary teams together already during the learning phase. This will help to understand the different tasks and views of the

**2.3 The six-step approach to education in palliative care for all**

different professions and can help a team-based approach.

#### **Figure 1.**

*Palliative Care*

enormous task without an increased contribution from the public. In order to meet the needs of as many dying people as possible, the health care system has to cooperate with relatives, friends, and the whole community [1–4]. Based on these facts and thoughts, there is a need that everybody should be educated in palliative care in

As pointed out above, the enormous need for palliative care in the future indicates a need not only to educate health care professionals about palliative care but also to include the whole society and all citizens. First Aid and emergency care can be used as an example for cooperation of the health care system and citizens. Without the help of citizens who provide first aid, many people would die or suffer from more serious damages following a heart attack, cardiac arrest, or trauma. The example of the city of Seattle in the USA has shown that the public can be trained and motivated to participate as bystanders in emergency care [6, 7]. In Seattle, 850,000 people have been trained in cardiopulmonary resuscitation (CPR) since 1971 [6]. The crucial factors to achieve that have been public education classes where people have to attend only once for a short period of approx 1–2 hours and

Several models of implementing palliative care have been described in the literature [8, 9]. The most common used approach uses an expert to ensure a good quality of palliative care provision [8, 9]. Based on my experience from working at Harborview Medical Center in Seattle and observations from the work of Medic I and Medic II, I have adapted the approach from emergency medicine applied in Seattle to the field of palliative care. The so-called *public knowledge approach* [7, 10–13] aims to incorporate knowledge about palliative care and end-of-life care in public knowledge that everyone should have. This should in the future become an essential part of public education in schools alongside with biology and first aid education. Palliative care knowledge for the public in palliative care can in analogy with first aid be called *Last Aid*. This expression makes it clear for most people that it includes care at the end-of-life. Many people associate care at the end-of-life and a supplement to first aid with the term *Last Aid* [14]. The public knowledge approach assists implementation of palliative care in the public and may enhance knowledge about palliative care for all health care professionals and the public. It uses lay people to make palliative care available everywhere for all people in need. The *Last Aid course* forms the educational foundation of this approach in order to enable everyone to provide palliative care in the community. It may also form an essential component of the compassionate community approach [15]. The *Last Aid course* will

In analogy to the chain of survival used in emergency medicine (**Figure 1**), a *chain of palliative care* (**Figure 2**) was introduced to illustrate palliative care provision in the community. The first step is that the patient himself or others (e.g. relatives, friends, and neighbors) recognize a need for palliative care. The approach is patient-centered. As in emergency care, one contact (the emergency call) should be enough to get the level of care which corresponds to the patients' needs. If a

order to be capable of caring for seriously ill and dying people at home.

**2. Learning palliative care throughout life for everybody**

broad information and motivation of the public [6, 7].

**2.1 The public knowledge approach**

be described in more detail under 3.

**2.2 The chain of palliative care**

**4**

*The chain of survival (from emergency care).*

general practitioner or a community nurse need help to treat a patient, a palliative care specialist or a specialized palliative care team should be contacted. The patient might be admitted to a specialized palliative care ward if it is not possible to provide satisfactory care within the home.

### **2.3 The six-step approach to education in palliative care for all**

This approach (**Figure 3**) includes education for the public as initial step. One important feature is the demand for multidisciplinary education for all professionals involved in palliative care. Multidisciplinary education can be used to include a team-based approach not only in palliative care provision but also already in learning palliative care. This may increase the understanding of the different views of the different stakeholders involved in palliative care provision. Unfortunately, most education programs in palliative care for health care professionals are monodisciplinary [7]. The European Association for Palliative Care has described three levels of palliative care knowledge (A, B, and C), and educational programs have been designed for professionals (nurses, physicians, etc.) in the field of palliative care according to [16]. In order to include the public, as well as leaders and researches, the six-step approach has been modified to include six different levels. These are six steps on the ladder to education and acquisition of competence in palliative care. It is important to aim for a multidisciplinary education in order to bring the members of the future multidisciplinary teams together already during the learning phase. This will help to understand the different tasks and views of the different professions and can help a team-based approach.

#### **Figure 3.**

*The six-step approach to education in palliative care for all.*

The six steps will now be explained in more detail:

• *Step 1:* Public knowledge about palliative care and end-of-life care for all citizens. Learning palliative care should start already in school. Step 1 is at the same time the basic knowledge for all health care professionals and the whole staff working in hospitals, nursing homes, and other facilities that provide medical

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*Palliative Care Education for Everybody DOI: http://dx.doi.org/10.5772/intechopen.85496*

treatment.

knowledge in practice.

**3. Teaching the public**

**3.1 The** *Last Aid course*

care and sometimes palliative care. This includes also staff members working in

• *Step 2:* Palliative care knowledge for all health care professionals including those who do not regularly provide care for seriously ill and dying people. This is meant to ensure an adequate level of care throughout the health care service.

• *Step 3:* Health care professionals who often have to provide care for seriously ill and dying people need a good knowledge about palliative care and symptom

• *Step 4:* 160 hours of training have been suggested as appropriate for health care professionals who have to care for seriously ill and dying people on a regular basis.

• *Step 5:* A specialized education is needed for health care professionals and others whose main task is care and treatment of seriously ill and dying people. Some countries have for example already introduced a specialization or sub-specialization for physicians and nurses. This helps to ensure a high level of specialized palliative care. Also for these people, education should be as multidisciplinary as possible.

• *Step 6:* Further academic education leading to a Master or PhD degree is

important for future leaders and researchers in the field of palliative care. The academic education should aim to support multidisciplinary work in teams, leadership, and research to implement new knowledge and to establish new

In Germany, the *Last Aid course* is recognized by the German Association for Palliative Medicine (DGP) and the German Hospice Association (DHPV) as first step of the education in palliative care for both lay people and professionals (personal communication). All health care professionals should have a basic education in palliative care (step 2). According to the grade of daily involvement and professional role in palliative care, the steps 3 to 6 show the educational level suggested for health care workers, leaders, and researchers in the field (**Figure 3**). The Last Aid course is designed as a joint foundation for both lay people and professionals. As for first aid courses, it is recommended to repeat the Last Aid course after a few years to keep updated with the current knowledge and practice. The international *Last Aid* working group revises the curriculum and the course presentation at present every 1 to 2 years.

Different authors have suggested that there is a need to teach the public about palliative care [7, 10–13, 17–19]. Nevertheless, there are just a few existing projects that try to teach the public on a large scale. Approaches that have been used are for example: group teaching of family carers in Australia [20, 21] or the open formats of the so-called death café or death chat [22, 23]. The latter invite people to discuss death and dying on a drop-in basis without any obligation to participate again.

A model to teach the public about palliative care is the *Last Aid course*. The *Last Aid course* is a clearly structured approach (like a first aid course) where knowledge

cleaning, household, mechanics and administration, etc.

*Palliative Care*

**6**

**Figure 3.**

The six steps will now be explained in more detail:

*The six-step approach to education in palliative care for all.*

• *Step 1:* Public knowledge about palliative care and end-of-life care for all citizens. Learning palliative care should start already in school. Step 1 is at the same time the basic knowledge for all health care professionals and the whole staff working in hospitals, nursing homes, and other facilities that provide medical

care and sometimes palliative care. This includes also staff members working in cleaning, household, mechanics and administration, etc.


In Germany, the *Last Aid course* is recognized by the German Association for Palliative Medicine (DGP) and the German Hospice Association (DHPV) as first step of the education in palliative care for both lay people and professionals (personal communication). All health care professionals should have a basic education in palliative care (step 2). According to the grade of daily involvement and professional role in palliative care, the steps 3 to 6 show the educational level suggested for health care workers, leaders, and researchers in the field (**Figure 3**). The Last Aid course is designed as a joint foundation for both lay people and professionals. As for first aid courses, it is recommended to repeat the Last Aid course after a few years to keep updated with the current knowledge and practice. The international *Last Aid* working group revises the curriculum and the course presentation at present every 1 to 2 years.
