Dealing with ethical and existential issues at end of life through co-creation

Background

Dahlin ¹⁷ states that unease in the context of care can result from concealed or open conflicts about what constitutes “best care” for a patient. In home care, community nurses often work alone and therefore often face ethical issues or ethical dilemmas by themselves. ^9,18,19 While different terms are used to denote moral problems, for example, “moral issues” or “moral conflict,” moral problems are most frequently referred to as “ethical dilemmas” or “moral dilemmas.” ²⁰ Dilemma as a concept refers to involvement with a situation, an awareness of alternatives, the need to make a decision, and uncertainty about the best solution. ²¹ Therefore, one may state that the concept of an ethical dilemma is linked to choices and conflicts between values, principles, and duties. ^21,22 Barbosa da Silva ²³ describes an ethical dilemma as “a situation where a person experiences a conflict where he or she is obliged to perform two or more duties, but realizes that whichever action he or she chooses will be an ethically wrong one” (p. 154). Ethical dilemmas in end-of-life care are related to decisions on whether to withhold or withdraw interventions or treatment. ²⁴ In most countries, patients cannot legally demand treatment that is not conducive to their best interests, and health professionals throughout the world follow the Hippocratic Oath, which includes treating the ill to the best of one’s capabilities. One can therefore surmise that the assumption is made that life is to be preserved. ^25,26 A person’s right to self-determination is the basis from which many ethical dilemmas stem. ²⁷ Ethics should not be confused with morality; an ethical dilemma is also distinct from a moral dilemma. According to the Code of Ethics of Nursing, ²⁸ morality is linked to individual or personal beliefs and values, and in ethics, right and wrong are defined using an external source or code of behavior. Ethical issues comprise another closely related concept seen in home care nursing. Ethical issues are complex, but may concern situations where nurses experience uncertainty of what actions are appropriate ^29,30 and questions regarding what is right or good in a specific situation. ³¹ These ethically difficult situations may concern issues such as behavior, treatment or resources, ³² and pain management. ³³ In addition, Muldrew Nee Preshaw et al. ³⁴ reveal ethical issues experienced by nurses in palliative care in three domains: ethical issues in practice, relational issues, and organizational issues. Preshaw et al. ³⁵ write that while ethical issues are unavoidable in nursing, they can have a positive effect on improving care and work conditions. In a literature review on the ethical issues experienced by healthcare workers in nursing homes, researchers found that the most common ethical issues experienced were related to clashing ethical principles, communication, a lack of resources, or quality of care provision. ³⁵ Nurses are responsible for alleviating patients’ suffering, which corresponds to the philosophy of end-of-life care. ⁴ One reason why nurses may have problems dealing with ethical issues could be related to behavioral issues, such as lack of respect for patients’ self-determination ^{36 –38} or confidentiality and integrity. ^38,39 Fry and Damrosch ⁴⁰ found that nurses mostly experienced ethical issues related to, for example, protecting patients’ rights and human dignity, respecting/not respecting informed consent during treatment, providing care that constituted a possible health risk, use/nonuse of physical or chemical restraints, and “staffing patterns that limit patient’s access to nursing care.” Ethical issues that nurses in intensive care units face include end-of-life issues related to, for example, prolonging the dying process through unnecessary procedures. ^41,42 The different backgrounds and experiences that nurses have, for example, in relation to age, gender, education, knowledge of ethics, or work experience, affect their capacity to identify ethical issues in clinical contexts. ^19,43

People nearing the end of their lives and older people with severe illnesses often have more complex needs than those in other age groups. ⁴⁴ Palliative care is defined as an approach that improves patients’ quality of life (QOL) and that of their families through prevention, early identification, assessment, treatment of pain, and other physical, psychological, and spiritual needs. ¹ The concept palliative care has been used interchangeably with, for example, terminal care, end-of-life care, or hospice care. ⁴⁵ Palliative care concerns a complex caring practice, ^{46 –49} where nurses are expected to deliver high-quality care. While hospital settings have traditionally been the main “location of death,” a shift from giving care in hospital to community settings has occurred, which allows individuals to die at home. ⁵⁰ Nurses have a multifaceted and complex role when caring for a dying person ^51,52 and especially with regard to palliative home care because adequate support and resources are often lacking. ⁵³ Rainer et al. ⁵⁴ have also found that most ethical dilemmas in care contexts surface from end-of-life issues and decisions. ⁹ Fromme ⁵⁵ mentions that ethical issues in palliative care are concerned with legalities of end-of-life care, advanced care planning, inappropriate use of medical interventions, and symptom-specific issues. Ethical issues at the end of life may also concern questions about palliative sedation, ⁵⁶ often mentioned as the most delicate and ethical issue in end-of-life care. ¹⁸ Ethical issues can be related to a lack of family understanding or relatives’ unrealistic treatment expectations and demands. ^16,34,36,57 These demands give nurses experiences of powerlessness. ¹⁶ Frustration in palliative care arises when nurses feel that the patient’s next-of-kin do not have confidence in them. ¹⁶ Another difficult issue can be confidentiality, meaning situations when next-of-kin pressure nurses to disclose patient information. ³⁶ Hernández-Marrero et al. ¹⁸ have found that communication is a sensitive ethical issue. Ethical issues may surface from conflict with physicians or organizational limitations. ⁵⁴ Different opinions regarding end-of-life care and gaps in communication between nurses and other professionals can be a source of stress for nurses. ⁵³ Ethical issues in palliative care can be that nurses experience conflict between what their duty is and what they feel is right. ³⁴ Ethical issues also emerge when nurses are worried about a possible lack of consensus among colleagues regarding about how to care for the patients, for example, with regard to pain relief. ¹⁶ Nurses can experience a sense of powerlessness when physicians are the sole decision-maker, ⁵⁸ and they can feel obliged to continue treatment and tests if they are dependent on the physician. ¹⁶ Powerlessness can give rise to frustration, and nurses can feel powerless if they are unable to solve ethical dilemmas. ⁹ In end-of-life care, the most frequent ethical issues that nurses face include advanced care planning and surrogate decision-making. ¹⁹ Respecting patients’ autonomy has limits, and health professionals need to be aware of these limits in relation to their responsibility to do what is best for the patient, use resources fairly, respect patients’ autonomy, and engage in truth telling. ²⁷ Patients’ right to independently make decisions about their end-of-life treatment must be respected ethically and given consideration in relation to the use of advance treatments and prognosis. ⁵⁹ Patients’ right to independent decision-making has some limitations and therefore includes ethical dilemmas. ⁵⁹ Health professionals must respect patients’ autonomy while also considering the limitations of such and performing caregiver duties to patients’ advantage while also not causing any harm. ²⁷ A central challenge that nurses and physicians face is witnessing the suffering of patients and patients’ families during end-of-life experiences. ⁶⁰

In nursing, the concept of co-creation is defined as deep nursing: a solicitous and considerate co-created nursing process that entails a personal nursing practice enabled through perceptiveness and attention to patients, spending time with patients, and reflecting on nursing encounters. ^{49,61 –63} According to Palumbo, ⁶⁴ co-creation relates to that patients should be involved in honest and comfortable relationships with their healthcare providers because patients are effective members of the healthcare team. Co-creation in nursing care is more than simple collaboration with patients. ⁶⁵ It is also the joint creation of vital goals for patients through the process of sharing knowledge, with the aim to enable the creation of opportunities and achieve the best possible essential goals for patients. ^49,61 All team members, nurses, patients, and their next-of-kin should share knowledge in the caring relationship so that they jointly contribute to the striving to fulfill the patients’ goals. ^61,62 If nurses perceive patients as experts on how to live their lives, they can utilize their expertise and experience by engaging them in dialogues through co-creation, ⁶⁶ through attentive listening, and plan the best possible care goals. ⁶⁷ In home care, co-creation can be understood as the relationship between healthcare providers, patients, and informal family caregivers, and these relationships can be seen as the growth of a professional friendship, where all parties meet the other as an individual. ⁶⁸ Karlsson et al. ¹⁶ have found that nurses in a palliative care context took their duties seriously, for example, their responsibility toward their patients and for providing high-quality care for them at the end of life. ⁵² Co-creative processes are multifaceted and include main, sub-, and microprocesses. ⁴⁹ Time has been found to play a particularly important role in co-creation. ^49,63 Many patients wish to receive comprehensive information about their health status, but as patients come closer to the end of life, this may decrease. ^69,70 Research shows that existential issues are more profoundly present in end-of-life and palliative care than in any other care context. ⁷¹ Faced with new and unexpected life situations, patients need not only their physical and medical needs addressed but also their emotional and existential needs. ^{72 –75} Yalom ⁷⁶ and Van Deurzen ⁷⁷ find that existential dimensions (issues) are always present in human life. Existential issues can include the meaning of life, loneliness, death or freedom, and are commonly experienced by all humans, regardless of the context or background. ⁷⁶ Nelson-Becker ⁷⁸ defines existential issues as challenges associated with an individual’s beliefs, values, behaviors, and experiences that are related to ultimate meaning and which often involve subjective experience and contemplation on the nature of human existence, formulated from the perspective of secular and humanistic thought. Religious issues can be considered challenges associated with values and beliefs that are related to an individual’s perspective on the meaning of life. ⁷⁹ Spiritual issues can be considered as an umbrella concept encompassing both existential and religious perspectives. ⁷⁹ Kallenberg ⁸⁰ notes that for patients in palliative care, existential issues are questions associated with the meaning of life, death, guilt, and reconciliation. Addressing patients’ existential issues is a fundamental element of all-embracing palliative care, ¹ yet researchers have found that nurses often find it challenging to talk with patients about existential issues. ^{81 –83} Cancer and palliative care patients often have existential concerns and a desire to discuss existential issues. ^{10,84 –86} Nurses can help patients avoid unnecessary anxiety by showing compassion for each patient’s uniqueness through acknowledgment of the patient’s personal issues. ^87,88 In addition, if patients’ feelings related to a sense of meaninglessness are acknowledged and patients are supported by nurses in their ethical questions, patients can cope better with their illness and cure. ^84,89 If nurses do not acknowledge such feelings, patients’ QOL may be affected in a negative way. ^90,91

McSteen and Peden-McAlpine ⁹² highlight that the need for patient advocacy often arises in ethically difficult situations, and for nurses to act as strong advocates for dying patients means that they are guides, liaisons, and supporters. Ethically difficult situations might also be differences between nurses’ and patients’ opinions regarding what to do or whether the patients do not follow staff recommendations. ^21,38

End-of-life care can also be ethically difficult for nurses ³⁴ because being constantly confronted with death in palliative care reminds them of their own mortality, and stress factors such as grief are common ⁹¹ and also moral distress. ⁹³ Karlsson et al. ¹⁶ mention reflection as a means of reducing these kinds of difficulties or stress factors, or feelings of powerlessness and frustration for nurses. In fact, reflection can strengthen nurses’ ability to remain close to the dying patient. ¹⁶ Nurses need continuous support for reflecting on ethics in order to enhance quality assurance in healthcare. ⁹⁴ Jacobs ⁹⁵ also states that support regarding moral sensitivity, critical thinking, and trans-professional working should be part of their professional development as nurses. However, research indicates that nurses are not always aware of ethical dimensions in their work. ⁹⁶ Sometimes nurses might even ignore ethical issues or avoid them by adjusting their work procedures. ⁹⁶ Molewijk et al. ⁹⁷ suggest that dealing with concrete ethical issues requires knowledge of complex and highly specific circumstances. Wilson et al. ⁴⁴ state that a high level of palliative care knowledge provides nurses with more positive attitudes toward the care of patients at the end of life.

Nurses come close to patients in different situations and are allowed to touch the patient and be touched both physically and spiritually in these encounters. ¹⁶ Ethical issues in palliative care can emerge from conflict with families and patient privacy concerns. ⁵⁴ The nurse’s work can be particularly difficult in palliative care since the care can involve the whole family, ⁹⁸ which, among other things, involves being faced with ethical dilemmas as a result of the close relationship with the parties involved. ⁹⁹ Relational issues, for example, with residents and families, cause the greatest distress among nurses in palliative care. ³⁴ Relational issues involve, for example, conflicts within the relationships of staff, families, and residents, including attentiveness to resident care needs. ³⁴

This concerns, for example, communication with the patient about the diagnosis/prognosis, and also communication with relatives is mentioned as complex. Rasoal et al. ¹⁰⁰ have shown that ethically difficult interactions with patients and next-of-kin can make nurses feel powerless. Powerlessness comprises feelings of insufficiency and difficulties to respond or manage the emotional needs of the patient or next-of-kin. Other reasons for a sense of powerlessness are uncertainty regarding who should have power over life and death, disclosing the truth, or how much power next-of-kin should have. ¹⁰⁰

Building on previous research, the co-creation of vital goals for the patient in home care is important, ⁶¹ and time is considered to be highly important. ^49,63 Previous research shows that co-creation can also be seen as an aspect of caring ¹⁰¹ or compliance and that nurses’ role is to create conditions for co-creation as well as provide patients with the space to enjoy the freedom to choose. ^63,101 Therefore, we seek to explore co-creation as a means for dealing with ethical and existential issues at the end of life in palliative home care from a qualitative perspective.

Data material and data collection

Twelve nurses, 1 man and 11 women, between 23 and 64 years of age in Finland were interviewed about their experiences of ethical sensitivity and co-creation in a home care context. The participants were from both urban and rural areas in a bilingual area of Ostrobothnia and shared the same socioeconomic background (see Table 1). They all worked in home care contexts, and one of them also worked on a clinical ward. The participants were recruited from two public care organizations and one private home care organization in Ostrobothnia in cooperation with the head nurses. The in-depth interviews took place in 2018, either in the previously mentioned home care contexts or at the university where one of the researchers worked. The interviews lasted between 60 and 90 min and were transcribed by the first researcher.

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Table 1.

Study participants.

Participant number	Age	Gender	Work experience	Current setting
1.	64	Female	43 years as a nurse	Private home care organization
2.	52	Female	13 years as a nurse	Private home care organization
3.	56	Male	33 years as a nurse	Public home care organization
4.	46	Female	26 years as a nurse	Public home care organization
5.	23	Female	1 year as a nurse	Public home care organization
6.	49	Female	25 years as a nurse	Public home care organization
7.	62	Female	27 years as a nurse	Public home care organization
8.	39	Female	18 years as a nurse	Public home care organization
9.	52	Female	34 years as a nurse	Public home care organization
10.	50	Female	30 years as a nurse	Private home care organization
11.	45	Female	22 years as a nurse	Public home care organization
12.	52	Female	31 years as a nurse	Public home care organization/clinical ward

Thematic analysis

The researchers analyzed the data material using a thematic analysis inspired by Braun and Clarke. ¹⁰³ First, both researchers individually analyzed the material through a repetitive process in recurrent movements of close reading and with openness to allow the substance to emerge bit by bit. Second, they regularly engaged in discussions. Third, they generated the final analysis together. The researchers categorized the data material into one main theme and four subthemes. The interpretation, carried out in a spirit of hermeneutics, moved between interpretation and understanding, and the whole-parts-whole. The material was approached with alert watchfulness. For the purpose of guaranteeing mastery of their pre-understanding, the researchers were careful to formulate it during the interpretation. In this way, they also prevented their pre-understanding from guiding the interpretation. As the reading challenged the pre-understanding, the researchers invited it, together with the substance of the material, into the scientific dialogue.

Ethical considerations

This study is conducted according to the guidelines outlined by The Finnish National Advisory Board on Research Ethics. ¹⁰⁴ One of the researchers personally contacted (through e-mail) the nurses who were chosen for participation in this study. The nurses were provided information about the study purpose, confidentiality, withdrawal of consent, and intent to publish, in both oral and written form. The researchers sought informed consent from the respondents regarding study participation and storage and handling of the data for research purposes. Moreover, the organizations where the participants worked approved the study.

Deep co-creative relationships are needed to manage ethical and existential issues at the end of life

The main theme concerned the need for nurses in palliative home care to establish deep co-creative relationships in order to gradually reach a patient’s inner thoughts to be able to help the patient manage ethical and existential issues at the end of life (see Figure 1). Important aspects for establishing this deep co-creative relationship are as follows: trust, time, attentiveness, responsiveness, sensitiveness, closeness, touch, and continuously asking questions. Co-creation within the palliative home care context means that the nurse follows the patient in an oscillation between hope and despair, seriousness and play, humor and closeness, and distance and depth. By being responsive and attentive, nurses may follow in this journey, close to the patient and sometimes the patient’s relatives, in a deep relationship to help create solutions to ethical issues:

…it becomes an oscillation in this way [uses hand to show a wave movement]…that sometimes takes you up a little [from the depths of despair] and then I use some humor and…and try to mix in something [light-hearted]…in all this heavy…and then we are up on the surface trying to get some air and…then we must dive down again in the difficult issues [deeper]…(P9)

Enabling good relationships between patients and relatives until the end of life through co-creation

This subtheme concerned the possibility of supporting good relationships between patients and their relatives through co-creation at the end of life. This includes not only, for instance, to make next-of-kin understand the patients’ perspective regarding the end of life but also to make patients see things from the point of view of their next-of-kin. This is to avoid, for instance, that next-of-kin “drain” the patients’ energies by forcing them to go to medical examinations and treatments although they no longer wish to do so. In this situation, it is important to broach the topic with the patients’ next-of-kin and explain that much valuable time is maybe wasted because the patients instead want to enjoy the time they have left in their own way. Nurses become mediators between patients and their next-of-kin in co-creation, where they discuss ethical difficulties and together create opportunities on the journey toward the end of life. Yet, cooperation may be difficult if patients and their next-of-kin do not have the same understanding of the illness. If patients and their spouse suffer separately and do not have the courage to talk about difficult issues, but instead experience anxiety, nurses need to intervene, for instance, in the following way: ‟…I concretely bring it up and say ‘now you are both equally miserable and you think about the same things, have you thought about talking to one another about it…?’” (P1). The participants mention that one becomes closer and have a deeper relationship if one has the courage to show each other one’s own vulnerability. Paradoxically, being “weak” leads to well-being. It is not helpful to refrain from showing sadness to avoid that the other person should feel bad, and here nurses can be a support:

I [the next-of-kin] may not want to show that I am sad, so that the other [the patient] will not feel bad…but it is quite the opposite…but you [the next-of-kin] are sad because you care…and that is comforting for the other [patient]. (P1)

Supporting a good dying process through co-creation—for the patient to be able to live while dying

This subtheme emphasizes that supporting a good dying process through co-creation can enable the patient to live while dying. This means supporting wishes of, for example, not dying alone. Sometimes humor while handling difficulties was something that could alleviate the dying patients’ suffering. Participants point out that they strive to fulfill the patients’ wishes until the end of life. One participant relates: “They often say ‘I do not want to be alone…when I die…’” (P7). Co-creation also means that if the nurse has promised the patient that the patient can die at home, the nurse also has to ensure in an ethically sensitive way that this is what will happen. Nurses should regularly ask whether they wish to die at home is the same or whether it has changed, because no patient should be forced to die at home if that suddenly makes the patient feel unsafe. In order to support a good dying process through co-creation, the nurse has to listen to the patients’ goals, wishes, and questions and instill a feeling of security and also enable pain relief at the end of life. Being able to express their wishes together with the nurses may sometimes alleviate the patients’ suffering:

But it is important that someone is there, holding your hand, that you do not need to die alone…And they have an infusion pump for the delivery of pain relief and pain so that no one should die in pain. There is medication that we can give them, and everything is according to doctor’s order. But many times…just being able to talk about it…and to express this wish, can alleviate suffering…Knowing that someone else knows your wish. (P7)

Patients should have the right to choose to do what they want with the time they have left and what kind of atmosphere they want. Many wish to remain cheerful with the help of humor until they die or during the whole process of dying, and this means that nurses must perceive, understand, and follow this oscillation up or down (see Figure 1). Humor from both nurses and patients can be one way of “playing with” each other and the situation, but it always has to be on the patients’ terms. This is what one participant says: “and they do not expect you to be sad when you arrive but they want you to be a little cheerful and cheer them up” (P1). Humor can be important for many patients to be able to deal with difficult issues at the end of life, and it can be a significant part of palliative home care because, paradoxically, it can enable patients and nurses to discuss difficult and deep issues. It can also be a relief because it makes it easier to deal with difficult issues and gives new strength:

…you also notice that patients may try to joke a little…and then you need to catch on right away and relieve the atmosphere and…because you cannot be there [in the deep] all the time. You have to lighten things up…. (P9)

Supporting hope and meaning from a deeper perspective at the end of life through co-creation

Encouraging hope and meaning from a deeper perspective is essential at the end of life. This can be done by encouraging patients’ hopes of fulfilling goals and wishes about what they find meaningful in life. Especially in end-of-life situations, it is common for patients and their next-of-kin to have completely different goals with regard to care or compared to the caring team. For instance, some relatives feel that treatments should be given until the end even though the patient does not share this goal. In such situations, it is important that nurses discuss with the patient’s next-of-kin and explain the patient’s perspective, who needs to feel meaning and hope at the end of life. Nurses who respectfully use co-creation to enable the patient to participant in and influence the decision-making related to treatment can provide meaning in end-of-life care. As one participant says,

No, from the beginning I thought that we use a PEG [feeding] tube…so that [the patient] could receive nourishment…But…[the patient] refused because she did not want to go to a hospital. So the alternative was to insert [a tube] in a vein. So it became in this way a little different, and according to her wishes…she was the one steering. She to be sure steered very well all the way. So she got to have [her care] patient-centered all the way. So in this way she got to contribute and feel the meaning in care…(P2)

Enabling existential questions about life and death in the process of dying through co-creation with all involved

This subtheme concerns co-creation in the palliative stage as enabling deeper existential questions about life and death in the process of dying with patients and their next-of-kin. After a good relationship in the palliative stage has been created and nurses become close to patients, they can broach deeper issues in a natural way:

…so you sit there close next to each other and suddenly you start reflecting together…and I may ask “What do you think about the future…?” and perhaps they say that “I take one day at a time…and I know that I do not have much to look forward to.” [and you enter deeper into the topics]…And in this way you can ask do you think about death? That these questions emerge from a sense of calmness in a way…that you first have to create trust and then these issues appear gradually in a natural way…[as the relationship deepens] (P2)

Strengths and limitations

The results might have been different if the participant group had included, for example, more male respondents. Consequently, this may represent a source of bias that may limit the generalizability and comparability of the results. This study is, however, reliable and includes a nuanced representation of the subject matter. In addition, the interviews generated rich data on nurse’s experiences of encountering and tackling ethical and existential issues through co-creation in palliative home care. From an ethical perspective, this study is defensible, as the experiences related by the nurses can potentially be of help for others in developing a more profound understanding of co-creation in palliative home care. While interviews were used in this study, observation studies should be conducted in the future.