Palliative Care In Community Setting: Ahmed’s Case Scenario

Community Based Care for Patients with Life Limiting Illness

Discuss about the Attempt Cardiopulmonary Resuscitation Policy.

In the context of Ahmed’s case scenario, it is seen that Ahmed was receiving palliative care in a community care setting. Community based care can be defined as coordinated integrated care provided in community setting such as health care clinics, patient’s home, hospices and any public health units. Patient centred and population centered care is a priority in community based care and it is responsive to social, language, cultural and gender difference of client (Kogan, Wilber and Mosqueda 2016). Community based care includes various types of care services such as primary care services, treatment and management of chronic illness, rehabilitation support and end-of-life care. In the context of patient with life limiting illness, palliative care in the community setting is provided through established delivery systems such as electronic palliative care delivery and utilization of different technologies to meet increasing palliative care needs (Daubman, Rosenberg and Kamdar 2017). The main goal is to enhance the quality of life of people (Walshe and Luker (2010).  Rosenwax et al. (2015) argued that the advantage of palliative care in patients with cancer is that it significantly reduced the number of emergency department visits in the last year of life. However, for Ahmed, the need to discuss about DNR request came up because he was at the end stage of metastatic lung cancer.

Community nurse is one member of the palliative care team who has specialized skill in providing physical care, coordinating work of others and dealing with emotional and psychological issues of patient (Seow et al. 2014). Specialist palliative care nurse also support community nurses depending on the complexity and needs of patient and family. Community nurse are involved in the assessment, planning and coordination of care for dying patients (McIlfatrick et al. 2017). A study done in 2010 provided a detailed account of the role of the district nurse in providing palliative care. Realist review of literature from electronic databases gave idea regarding different dimensions of their role.

Nurses had confident in providing physical care. However, literature revealed that many district nurse struggled with psychological aspects of care and they fail to understand patient’s and family’s perspective regarding going through the trauma of being diagnosed with a life limiting illness. Difficulty in effectively communicating with a dying person is also a challenge for them. The strength of the study is that as large number of qualitative studies were reviewed, it provided rich data on experience of district nurse in providing care to dying person. However, the study is limited by small sample size and poor quality research methods used in many qualitative studies (Walshe and Luker 2010).  It has also been argued that community nurse fail to address dignity and other concerns for people with life limiting illness McIlfatrick et al. (2017).

Role of Community Nurse in Palliative Care

The failure to address dignity creates issues related to patient and family’s dissatisfaction with care (Pringle, Johnston and Buchanan 2015). During the decision making process for DNR, I noticed that community nurse did not followed a patient centred care approach to first assess patient and determine the necessity of DNR for the patient. Communication process was compromised because patient’s consent related to the DNR process was not taken. According to Woo et al. (2013) nurses should act as an advocate while caring for patients with DNR. Hence, actions like evaluating patient’s perspective about DNR would have enhanced the likelihood of provding patient centered care.  Improving communication at the stage of Ahmed’ care was important as it has the potential to address patient’s need and preferences and support community nurse to provide transparent care. Research evidence also suggest that  collaborative practice can flourish when health care staffs respects and values the opinion of patients and their family including their cultural and ethical perspectives (Hileli et al. 2014). According to Nice guideline, ensuring good communication and shared decision making is necessary to reduce complaints over care at the end of life (NICE 2015).

By witnessing the decision making process of DNR, I could identify many gaps in such decision making process for Ahmed. DNAR or Do Not Attempt Resuscitation decision is centred around the decision to withhold cardiopulmonary resuscitation (CPR) during the event of sudden cardiopulmonary arrest of people (Mockford et al. 2015). Although DNAR decision making are common in palliative care, however it is associated with many ethical and legal challenges (Brogan, Hasson and McIlfatrick 2018). This is because the decision involves withholding CPR instead of providing it to patient. Hence, many people go against DNR process because it is a violation of patient’s autonomy (Altin and Stock 2016). However, the DNR process is favoured by many because it saves people from invasive treatment which ultimately yield no benefit for the dying patient (Downar et al. 2011). Although during cardiopulmonary arrest, the decision to resuscitate or not to resuscitate depends on the clinician’s decision making, however patients and family are involved because of the futility of the treatment in end-of-life patient (Salins et al. 2010). DNR decision making process became a subject of conflict in case of Ahmed’s case scenario. This was mainly because of different perspective of Ahmed’s wife and his family regarding well being and no step taken to assess Ahmed’s wish regard DNR. This occurred because of cultural gap and difference in values between the two parties. Ahmed’s family were from Arab and according to religious beliefs of Arabs, they do not favour taking their lives by themselves (Hileli et al. 2014). In contrast, Ahmed’s wife was more liberal in thinking because of her cultural background and she prioritised comfort ahead of religious values.

Challenges Encountered by District Nurses in Providing Palliative Care

The DNR request can be made by any patient according to DNAR policy. The DNAR policy lays out procedure which ensures that high quality CPR will be available to those patients who will benefit from it. The policy applies to registered nurse, doctors and allied health care professionals and provides the correct process for making, documenting and implementing DNAR decisions (NHS Foundation Trust 2016).  While appraising the DNAR policy, there is a need to consider different legal and ethical issues related to DNAR decision making process. This may help to understand the reason behind the conflict that occurred during Ahmed’s decision making process. The ethical questions arising while going with the DNAR process is related to patient’s autonomy and ethical values of beneficence and non-malificence (Salins et al. 2010). While providing care to patient, patient’s autonomy should be a major part of care delivery (Hess et al. 2015). This is also important as part of patient and family centred care. Patient centred care provides the scope to increases patient’s trust and satisfaction with care (Altin and Stock  2016). It is a care provision that is respectful of patient’s preferences, needs and values. While taking any care decisions for patient, validating with patients regarding their care needs is a responsibility for all health care professionals (Epstein and Street 2011). According to patient’s autonomy principle, patient must be informed regarding all decisions related to treatment and care. However, the extent to which this is fulfilled during DNR process is doubtful.  Azimzadeh et al. (2013) argues that providing patient-centred care in a cancer ward becomes difficult as all patients’ need cannot be met. Hence, care of patient with cancer brings unique challenges for health staffs. Similar kind of ethical challenges was witnessed while taking DNR decision for Ahmed too as he was in the end stage of metastatic cancer.

According to the above mentioned DNAR policy, DNAR order can be issued by a care provider or a physician only when the order is addressed by a fully informed patient with decision making capacity or a patient’s family member with decision making capacity or legal guardian with decision making authority (Griffith 2015). When the spouse or children or parent is more than one, then all must agree to the decision. However, this provision mentioned in the policy is questioned for end-of-life patients as they may not have the capacity to take such decision because of their illness. As per the ethical directive of patient’s autonomy and informed consent, a physician need to discuss about the proposed intervention, risk and benefits with patient to take best decisions regarding resuscitation and end-of-life (Shaw et al. 2018). In contrary, while working with seriously ill patients, clinical seldom discuss advanced care directive with patient. This is also understood from a research done by Gibbs, Malyon and Fritz (2016) which conducted an exploratory international investigation into the resuscitation decision making process.  Survey questionnaires related to DNAR decisions were collected from 143 medical professionals. Specific guidelines related to DNAR decisions where followed by 88% of respondents and 90% of them discussed DNAR decision with patient at least half of the times. However, the response of participants differed based on difference in cultural attitude towards death, role of family and medical education. However, the research can be generalized because large number of respondents from one particular country was taken. Evaluating perceptions related to DNAR process for countries with diverse culture was important. During Ahmed’s decision making process, difference of opinion between his wife and family member arose. At this point, it was essential for community nurse to openly discuss about end-of-life preference with Ahmed’s family members. As Ahmed was in coma, the possibility of assessing Ahmed’s wish related to the DNAR decision was also not there.

Importance of Communicating with Patients and Their Families

The complexity in DNR decision making process is also understood from numerous ethical, legal and biopsychosocial issues in care (Bjorklund and Lund 2017). Medico legal issues occurring during DNR process includes competency of client in decision making process, standards and process of decision making and several barriers in withholding DNR. One of the major flaws that I have identified during the decision making process for DNR was that conflict took place between Ahmed’s wife and his family regarding the decision making process. In the state of coma, Ahmed was not competent enough to take the decision by himself. Hence, Ahmed’s family had the responsibility to decide whether DNR was appropriate for Ahmed or nor. Miller et al. (2015) argues that indiscriminate use of CPR provide small beneficial outcome to patient and for cancer patients, it prolongs the dying process. Hence, to control indiscriminate utilization of CPR, identifying the patient who will benefit from CPR is paramount.

There are several factors that lead to inappropriate DNAR decision. One of the factors is that many clinicians hesitate to initiate such conversation with patients or the family members. The positive point of clinicians’ action in case of Ahmed’s case was that such conversation was initiated by the community worse while discussing with Ahmed’s wife regarding future treatment. However, the approach taken to discuss the utility of CPR for Ahmed was wrong. This was because the discussion mainly centred around specific treatment, but the discussion did not covered elements like patient’s values and motivation towards achieving an acceptable health states. Although Ahmed’s family was involved in DNAR decision making, however patient’s consent to the DNAR process was missing. According to guidelines for DNAR decision making in UK, the action is appropriate as either patient or family should be consuled while writing a DNAR notice (NHS Foundation Trust 2016). Fritz, Slowther and Perkins (2017) also argues that nurses avoid other assessment task and interventions for patients with a DNAR decision.

Through the experience of reflecting on the DNAR decision making process, I was able to identify flaws as well as the steps to correct certain flaws. For instance, it is eminent that the decision is not easy because of many ethical and legal dilemmas. However, by identifying the need to discuss CPR and its benefits for patient, I learnt about the importance of integrating advanced care planning in DNAR decision. Advanced care planning is defines as the conversation between patients, families and carers regarding future preference and priorities for care (The Gold Standards Framework 2017). It helps to resolve the issue of uncertainly while predicting future events for end-of-life patients. By focusing on personality plans for well-being of patient instead of attention to CPR treatment, many ethical issues can be addressed (Fritz, Slowther and Perkins 2017). In case of Ahmed’s case scenario also, I felt that clinicians, community nurse and other staffs should have also explored future wished of patient and their families to prioritize care for Ahmed. The main goal of advanced care planning is to clarify people’s wishes, needs and preference while planning care. This ensures that patients receive care consistent with their values and preferences (Heale and Noble 2016). Integration of advanced care planning with CPR decisions can be done by considering overall goal of care and analysing other alternative treatment that a patient would desire or accept. Hence, proactive conversation before the crisis is essential to ensure that patients like Ahmed received the right treatment at the right treatment with family member’s approval too.

The Complexities of Do Not Resuscitate (DNR) Decision Making Process

In community care service, the role of multidisciplinary health care team is crucial to maintain health of patients (Hall and Zierler 2015). Effective team work in health care setting prevent errors, promotes patient safety and increases likelihood of positive outcome for patient. In case of Ahmed’s care, apart from the community nurse, the oncologist, the physician, amd nutritionist were involved in his care. The community nurse played a vital role in the assessment of Ahmed from time to time and the clinicians and oncologist had the role in implementing chemotherapy and other required treatment for patient. All were performing their role and updating about Ahmed’s clinical status accordingly. However, one gap found in team particularly during DNAR decision was that team work and adequate discussion with the right person did not happened. For patient in palliative care, their disease and co-morbidities are very complex and several medical professionals handle the patient at the same time (Temkin-Greener et al. 2017).  In such situation, effective team work is needed. This is also very important while taking broader and complex decisions such as DNAR decision. Collaborative discussion helps to understand holistic care needs of patient, review patient’s wish and preference and understand the limits of treatment proposed in the future (Millerand Dorman 2014). In the case of Ahmed, such decision did not take place as members lack clarity regarding who should converse with patient regarding such decisions.

There are many factors that lead to inappropriate communication between medical team. Storaker, Nåden and Sæteren (2017) explained that feelings of anxiety or lack of confidence regarding skills for conversation about end-of-life issues refrain nurses from entering into such conversation. This point out to the need for further training of community nurse in the area of communication skills so that they can enter into sensitive discussions with end-of-life patient and develop knowledge related to evaluation of the benefits and challenges of using CPR for particular patients. While reflecting on the team work skills during DNAR decision making process, it can be said that involvement of one member who would lead the medical team was necessary (Ford et al. 2016). This would have helped to resolve the issue of poor clarity regarding individual responsibility of engaging with patients regarding DNAR decision. Rise of multi-disciplinary team in palliative care has yield many positive benefits for patient (Brogan, Hasson and McIlfatrick 2018). Several research evidences give idea regarding effect of collaborative practice on patient outcome. Team collaborative significantly influence the quality of care and patients experience with care (Körner et al. 2016). A longitudinal study revealed that inter-professional intensive care teams can reduce burnout and promote patient safety outcome (Welp, Meier and Manser 2016). It has reduced the risk of poor quality of care due to lack of coordination and communication skills. Having a multi-disciplinary team also ensures that holistic care needs of patient is fulfilled. This can be said because staffs coming from difference disciplines can focus on different aspects of care for the person. Inter-professional collaboration restricts clinical error, reduces duplication of effort and improves the quality of care (Reeves et al. 2015).

Ethical and Legal Issues in DNR Decision Making Process

Apart from poor implementation of DNAR process, another issue that acted as a barrier in the DNAR decision making process for Ahmed was the impact of language and culture gap on decision making process. Ahmed’s wife was a non-Muslim British having a different cultural value and language compared to his family who belonged to Syria and practiced Islam. Although language barrier was addressed by the use of translators, however tackling cultural differences in opinion was a difficult task. No senior members of the team took the initiative to judge cultural difference between the two groups. Miscommunication in the healthcare sector can be time consuming and the study by Meuter et al. (2015) revealed the impact of language barriers on quality of patient care and consultation process. The study shows that language often creates barrier in health care setting where large number of linguistically diverse population exist. Moore et al. (2017) suggest that explaining medication and its side effect becomes easier for health care professionals with the use of translators. The study explained that translators can eliminate barriers found in intercultural communication. However, Aranguri, Davidson and Ramirez 2006) also revealed that interpreters increase the challenges in achieving good physician-patient communication. Hence, physicians and interpreters should be trained regarding a communication process that minimize communication breakdown and maximize information taking process. At this point, it can be said that there was a need for community care setting to have a nursing model or values that respect spiritual, cultural and psychosocial need of patient and family members too.

As Ahmed family came from the Middle East region, the use of Crescent of Care model would have helped community nurse to understand care needs of Muslim patients. The suitability of Crescent of Care model in the context of Ahmed’s care is that has been developed by understanding the concepts of nursing practice in Saudi Arabia. Lovering (2014) implemented the model in a hospital of Saudia Arabia. The Crescent of Care nursing model adapts Islamic religious and cultural values and uses patient and family centred approach to care. Some important components of this nursing model include spiritual care, psychosocial care, cultural care and interpersonal care. Combining cultural values like Muslim’s spirituality with care has helped to fulfil holistic care need of patient (Lovering 2014). The strength of the Crescent of Care model is that can provide right guidance to nurse regarding the care of Muslim patients in clinical setting. In the context of conflict taking place during DNAR decision making for Ahmed, it would have been helpful if the leader in the multi-professional team took the approach to understand cultural values behind each parties decision and take appropriate steps accordingly.

The Need for Shared Decision Making in DNR Process

Critical reflection is an important exercise for nurses as it provides them the opportunity to look back at their nursing actions, evaluate the strength and weakness of their action and identify needs for future professional development. Reflective practice supports nurse to enter into clinical inquiry regarding care decision and integrate evidenced based practice to take optimal decisions for the care of patient (Garneau 2016). The activity of reflecting about the DNAR process for Ahmed’s case scenario has also helped to identify many errors in the process, understand the need for future practice development in the area and develop professional development goals for the future.

Reflecting on the scenario, I would like to say that as a specialist palliative care nurse, I faced extreme challenges in preparing Ahmed’s family for the DNR process. As Ahmed was in coma and he was not competent enough to take the decision, the DNR decision making process became even more difficult. One weakness of my nursing action was that I did not used my communication skills to enter into appropriate DNAR decision making process. For example, as DNAR decision making process required agreement of both Ahmed’s wife and their family members, I should have taken the approach to first rationally explain both parties why DNR was important for Ahmed. This would have helped Ahmed’s family understand the critical condition of Ahmed and some negotiations might have been possible. I also feel that I lacked confidence to enter into a complex conversation related to DNAR process. In accordance with the palliative care and end of life care plan, my plan is to reduce distress of patient by delivering well-coordinated palliative care and ensuring all written information is available to understand patient and their families. This would help me to understand innovative ways of working with patients at end of life (Welsh Government 2017).

Identifying this weakness, the plan of action for the future is to take training regarding communication related to complex issues in palliative care.  The Mental Capacity Act 2005 also states people working with adults who lack decision making capability have a legal duty to consider the code of practice (GOV.UK 2014). As DNAR decision has ethical and legal implications, I would also like to learn about all ethical and legal practice while engaging in DNR decision in community care setting. Cultural sensitivity is also an important element for holistic practice. My plan is to use the Crescent of care model in the future to ensure that values and preference of Muslim patients during DNR decision making process is understood.

Conclusion:

To conclude, reflecting on the scenario related to DNR decision making process has helped to understand the important process that is essential to take appropriate DNR decisions. While evaluating the DNR decision making process in collaboration with multi-professional team, I could identify several limitations in the process. After going through the guidelines for DNAR decision making process and relevant legal and ethical values related to the process, I have understood that putting patient at the centre stage is the most crucial aspect of decision making. The reflection has given the lesson that instead of focussing on the CPR, emphasis should also be on the patient. Assessment of patient’s preference regarding CPR, their understanding about CPR and their mental capacity to take CPR decision is important. Effective communication skills is also a necessary skill that nurse must develop so that they can effectively handle complex topics like DNR request. The reflective paper also evaluated barriers in the DNAR decision making process. Language and cultural gap between patient and health care professionals needs to be addressed so that patient’s perception regarding DNAR process can be evaluated.

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