The legal and ethical aspects of care for patients with long term conditions


Cirrhosis is part of the spectrum of disorders under alcoholic liver disease. Alcoholic liver disease covers diseases such as fatty liver, which progresses to alcoholic hepatitis, then culminates to alcoholic cirrhosis. Alcoholic cirrhosis is the most advanced form of liver injury and is irreversible, usually caused by too much alcohol consumption (Patel & Mueller, 2021). Alcoholic liver disease has three histologic stages: steatosis or Alcoholic Fatty Liver, where there is an accumulation of fat in the liver parenchyma; alcoholic hepatitis, where liver cells become inflamed; and alcoholic cirrhosis, there are portal hypertension and cirrhosis complications due to irreversible liver damage (Hussen et al., 2018, Weiskirchen, et al. 2018). Given the importance of the liver in the human body, liver disease, more specifically cirrhosis, has been a source of many deaths in the United Kingdom and across the world. In England alone, liver disease and liver cancer were responsible for 2.5 percent of deaths, with most of these deaths being among people of working age (Gov.UK, 2020). The Office for National Statistics reported that in 2018 cirrhosis, among other liver diseases were in the top 5 causes of death in England for people aged between 20 and 34 years. People aged between 35 and 49 years are the leading cause of death, causing more than 10 percent of the deaths in this age group (Gov.UK, 2020). Cirrhosis and other liver diseases also remain in the top 5 leading killers for individuals aged 50 and 64 years. There has been an increase in the rate of liver disease deaths since 2001. The rate reached its highest between 2015 and 2017, at 18.5 per 100,000 population. The exact rate was experienced from 2016 to 2018 (Gov.UK, 2020). Liver disease death prevalence across the United Kingdom is also highest among men than women (Stewart, 2021). In England and Wales, North Ireland, and Scotland, the liver disease mortality rate has been consistently and significantly higher in men, which is also true for liver cirrhosis in the United Kingdom. The liver transplant list in the United Kingdom had 455 people in March 2020, with the majority of the patients coming from England. In 2019/20, there were 903 liver transplants carried out across the United Kingdom, with England having 766 of the cases. Considering these numbers means that in 2019, the United Kingdom had a rate of 14.5 liver transplants per million people, making it the 12th highest rate across Europe (Stewart, 2021). Cirrhosis was responsible for more than 1.35 million deaths globally in 2017, with 33.3 percent female and 66.7 percent male. The deaths caused by cirrhosis in 2017 represented 2.4 percent of the total deaths globally that year (Sepanlou et al., 2020). 

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Holistic care and challenges of living with a long term condition 

The long term conditions are those conditions that have no current known cure, but pharmaceuticals and other holistic therapies can help in managing them (Department of Health, 2015). There are almost 26 million people across the United Kingdom suffering from at least one or more long-term conditions, and it is expected that the number will continue to rise in the coming years (Office for National Statistics, 2019). This represents a quarter of the adults who live in England, with the number expected to double from 2015 to 2035 (Kingston et al., 2018). More health services are used by people suffering from long-term conditions, accounting for 70 percent of England’s total expenditure on health and social care (Rolewicz et al., 2020). The prevalence of the long-term conditions has a strong association with deprivation, with the people who live in deprived areas experiencing multiple long-term conditions 10 to 15 years earlier than those in people in better-off areas. Living with a long-term condition has a significant impact on an individual’s life, with their quality of life reducing and chances of mortality increasing. There is a considerable treatment burden for the patients with long-term conditions, with their experience of primary care declining depending on how many long-term conditions they have (Rolewicz et al., 2020). The National Hospital Services (NHS) uses the House of Care framework to help people with long-term conditions improve their quality of life (NHS, 2014). The guidelines to enable the clinicians to be abreast with the current recommendations for specific long-term conditions and provide evidence-based care, help in commissioning decisions is published by the United Kingdom National Institute for Health and Care Excellence (NICE). The only challenge for these clinical guidelines by NICE is that they only address one single condition in isolation. The Chronic Care Model is another initiative aimed at improving the care given to people with long-term conditions and helping achieve better health outcomes (Healey et al., 2015). Another model used in the United Kingdom includes the NHS and Social Care Long-Term Conditions Model. Both the NHS and Social Care Long-Term Conditions Model and the Chronic Care Model highlight the critical components of the system which need to be addressed. The identified features include delivery system design, clinical information systems, decision support, and self-management support. The patients suffering from long-term conditions are usually managed by general practitioners with the help of practice nurses in primary care settings, and they utile almost 50 percent of all appointments (NHS, 2014). Other practitioners may be included in the wider primary care multidisciplinary teams, like pharmacists, physiotherapists, and mental health practitioners. Due to accessibility, general approach, ability to identify the community health needs, efficiency, and the ability to ensure that the services required are available, and the primary care setting is viewed as the optimal setting to help the people who are suffering from long term conditions (Healey et al. 2015). The biggest challenge for taking care of people with long-term conditions is that most guidelines are for single conditions and some patients have multiple long-term conditions. Combining the recommendations for these patients may lead to treatment regimens that are either burdensome or harmful. Focusing on the management of single conditions means that there are several challenges in trying to identify which patient groups can be given multimorbidity interventions. For those involved in providing care for these patients, the challenge is to determine who needs to determine which patients should be targeted, which conditions combinations should be targeted, and the severity of the condition to be targeted (Healey et al., 2015). 

Case study

CM, a 44-year-old female with alcohol liver cirrhosis with ascites, initially presented to Basildon Hospital in May 2019. CM is a formal health care assistant who lives with her husband and two children. She was an alcoholic for 20 years, and even though she quit just a few years ago, cirrhosis was diagnosed in 2019. A fluid began to be building in her abdomen approximately six months ago. CM’s review of systems was positive for abdominal pain and constipation, leg swelling, and skin rash at the first visit. A month later, she was positive for shortness of breath (SOB), bilateral lower leg edema. By the time of meeting CM, she has experienced eight ascites drain with approximate fluid removal of10-12 liters every two weeks.

Alcohol abuse is the leading mortality cause for people aged between 15 and 49 years (Pal and Ray, 2016). The leading etiology of cirrhosis in developed countries is alcohol (Pal and Ray, 2016). The patient, CM, has been an alcoholic for 20 years even though she quit taking alcohol a few years ago. The alcohol liver cirrhosis that CM was diagnosed with within 2019 was mainly caused by her 20 years of alcoholism. One of the most frequent complications of cirrhosis is ascites, and it occurs in almost 60 percent of patients who have been diagnosed within ten years with cirrhosis (Pedersen et al., 2015). Ascites occur when the peritoneal cavity accumulates more than 25 ml of fluid. There is a development of ascites in 75 percent of cases in Western countries because of underlying cirrhosis (Pedersen et al., 2015). If ascites are the first symptom, it may be due to cognitive heart failure, malignancy, tuberculosis, Budd Chiari syndrome, and pancreatic and not necessarily cirrhosis. Ascites development is related mainly to the retention of sodium and water in the kidney, which leads to a positive sodium balance (Sola et al., 2016). CM developed ascites as a result of her alcohol liver cirrhosis. The build of fluid in her abdomen six months was an indication that CM’s cirrhosis was in an advanced stage, and she had ascites, which is usually an indication of decompensation. Ascites cause the retention of water and sodium. The fluid accumulation in the patient usually results in the swelling of the abdomen, which leads to pain and bloating (Muir, 2015). CM’s abdominal pains and constipation result from the sodium and water accumulation in her body due to the ascites. CM has experienced eight ascites drain with approximate fluid removal of 10-12 liters every two weeks, meaning that she may have refractory ascites. According to a study by Muir (2015), refractory ascites do not recede, or ascites that recur too quickly after a patient has undergone therapeutic interventions. The refractory ascites are less common and have a shallow survival rate of 32 percent to 52 percent at one year. The prognosis worsens when there are hepatorenal comorbidities (Muir, 2015).    

The legal and ethical aspects of care for patients with long term conditions 

The rights of patients are a human rights subset. While the human rights concept refers to the minimum standards on how others can treat an individual, the ethics concept relates to traditional standards on how people should treat each other (Olejarczyk & Young, 2021). Taking this into consideration, rights and ethics are the opposite sides of the same coin. Behind every right for the patient, we have one or more ethical principles that the right came from others (Olejarczyk & Young, 2021). Having patient rights that are established and defined plays a significant role in standardizing care in all the healthcare fields, and patients can have uniform expectations when receiving their treatment. Organizations need to have a bill of rights for patients to empower people. Empowered people can play an active role in taking care of their health, strengthen the relationship between people and their healthcare providers and come up with rights for the patients when dealing with healthcare insurance companies or any other situations that relate to health coverage (Olejarczyk & Young, 2021). Like the other bills of rights, the bill of rights for the patients in modern times dictates that an individual should expect certain levels of treatment regardless of their religious affiliation, social-economic status, ethnicity, or gender. The rights that are commonly established are usually derived from a set of core ethical principles, which include the patient’s autonomy, the inviolability of human life, distributive justice, beneficence, and the provider-patient fiduciary relationship. The decision of whether a particular principle has more inherent value than another is a philosophical endeavor handled differently from one authority to another (Olejarczyk & Young, 2021). With the absence of legal standards in a certain situation, it is the obligation of the health provider to decide which principles require priority so that the patient can have acceptable outcomes.

In the case of CM, her cirrhosis is at an advanced stage, and she has developed ascites. One of the options available for her is doing an organ transplant for her damaged liver. There are a lot of ethical issues around organ transplants, especially for people with alcoholic liver disease. There is a general shortage of organs and cultural concerns around the issue of alcohol use, making organ transplants for patients with alcoholic liver cirrhosis very controversial (Singhvi et al., 2016). The ethical concerns are around the issue of equity and utility when it comes to scarce resources allocation. Patients with cirrhosis also have a lot of stigmas, as many argue that they have a disease that is self-inflicted (Singhvi et al., 2016). There has been a lot of debate around liver transplants for the alcoholic liver disease patients in the general public, patients, health care professionals, family members, and donors. The biggest debate is that patients are responsible for their health and that those suffering from alcoholic liver disease inflicted damage upon themselves by too much alcohol consumption, which ended up damaging their liver. Taking this argument into consideration, some people feel that taking a donor’s liver and giving it to an alcoholic liver disease patient is taking a very scarce resource from the patients who genuinely deserve it. Some people view this as being ethically wrong. The patients who have alcoholic liver disease are subject to additional protocols when evaluating their candidacy for transplant that are unique to alcoholic liver disease and have an influence on the status of their waitlist for a liver transplant. The 1997 guideline, which was established by the Census Conference on Liver Transplantation, has been traditionally adhered to by transplant centers. The guidelines recommend that alcoholic liver disease patients need to undergo an evaluation for liver transplant and need six-month alcohol abstinence before qualifying for a shortlist (Singhvi et al., 2016). The six-month period is meant to help them resolve their alcohol issues and reduce any chances of relapsing and subsequent graft failure.

Impact of health behaviors on long term conditions and role of the adult nurse in promoting health    

A person’s behavior concerning their health may affect their physical health and their ability to recover from an illness. Behaviors that are health-related such as drinking, smoking, and excise, are the main factors contributing to mortality and morbidity (Lee et al., 2020). Forty percent of premature deaths are affected by health behavior, meaning that improving health behavior can be considered more cost-effective than improving the physical and social environments or the health care systems (Lee et al., 2020). Health behaviors play a crucial role in good health maintenance, influenced by socioeconomic and biological factors. In the case study, CM developed alcohol liver disease that is now in its adverse stage in the form of cirrhosis due to her health behavior. She has been an alcoholic for 20 years which ended up impacting her health negatively by damaging her liver. According to the American Liver Foundation (2021), alcohol liver disease is usually caused by an individual consuming too much alcohol. The women who drink alcohol are also at a higher risk of developing the alcoholic liver disease than men. The health behavior of consuming alcohol can contribute to 3 types of liver diseases: fatty liver, alcoholic hepatitis, and alcohol-related cirrhosis. Even though alcohol liver disease is common, it is still preventable (American Liver Foundation, 2021) through good health behaviors like abstinence from alcohol. 

The adult nurse has a very important role to play in promoting health. In every setting and stage of health and care, there is a nurse working there, giving them a very important role to play in a wide range of public health interventions (The Royal College of Nursing, 2021). The nursing profession backbone has always been seen as one of a caring profession that excels in preventing diseases and promoting good health. The most critical role played by the nurse in health promotion is the role of an educator. The patients spent a lot of time with the nurses, and the nurses provided anticipatory guidelines concerning nutrition, immunizations, safety, medications, and dietary. According to Clayton (2016), the promotion of liver health needs to be an integral part of health care professionals’ role. The nurses are in an excellent place to have contact with the patients, that counts, thanks to the close relations they develop with the patients during care. The nurses have a big potential to encourage and empower people through the provision of information, giving support and treatment in order to help people live lives that are much healthier (Royal College of Nursing, 2012). The adult nurse is also very important in promoting liver health; they are in a good position to identify the people at risk of liver disease, recommend for them good support services and provide these individuals with general advice (Clayton, 2016). Nurses have the best qualification to be health promoters and advocates for good health behaviors, thanks to their expertise. Compared to other health care professionals, very few other professions have a high level of knowledge in health education, theory, skills, and research to help in prevention efforts. These skills and knowledge are part of the nurses’ professional development focus (Clayton, 2016). 

Relationship between physical and mental wellbeing and the effectiveness of integrated care

There are very high chances of mortality and morbidity associated with adverse failures of the liver, like in the case of cirrhosis, and the only hope for most patients is a liver transplant. The patients usually endure psychological and physical stress when they are awaiting their transplant (Swanson et al., 2018). People suffering from liver diseases, especially in their advanced stage, usually experience their physical health progressively declining, with symptoms such as ascites and renal failures, which may eventually lead to death (Scaglione et al., 2015, O’Leary et al. 2015). The patients may also experience muscle atrophy and detrimental malnutrition, which further impedes their functional status (De Lima et al., 2015). These symptoms of liver failure are most of the time in the patients’ control and will affect their day-to-day functioning, and may even sometimes lead to an inability to work, maintain their roles and responsibilities in the family and sometimes lead to psychological impairment and distress. According to Cron et al. (2016), there is an association between symptoms of mental health and the severity of the liver disease. They also argued that the consequences of mental health disorders have more consequences for patients with liver disease. From a nationwide survey of adults in the United States, it was discovered that 1.6 percent of depression patients suffered from liver disease (Strat et al., 2015). From the research, it was also found that from this group that had depression, there was a 3-fold suicide attempt higher in the patients with chronic liver disease than in the patients without chronic liver disease. A multidisciplinary or integrated medical care approach attempts to deliver health and social care that is coordinated to the patients suffering from comorbidities and diseases which are complex (Lemmens et al., 2015). The integrated care models have positively impacted outcomes in many cases of chronic diseases. According to Patel et al. (2018), integrated care has produced positive results for heart failure patients with multidisciplinary interventions like remote physiologic monitoring, home visits, telehealth, hospital/clinic team-based interventions, and telephone follow-ups have helped in reducing admissions to hospital and all-cause mortality. Similar outcomes can be achieved for patients suffering from alcoholic cirrhosis with ascites. Even though there are no guidelines set on how to approach patients suffering from liver disease and mental health disorders, there is promise in integrated care approaches that give attention to chronic liver disease and the patient’s psychiatric needs (Patel et al., 2018). Apart from the integrated care models producing positive medical outcomes, they also have positive impressions from both the patients and care providers who view favorably and positively the clinics offering integrated care (Patel et al., 2018). Treloar et al. (2014) and Horwitz et al. (2012), from their studies on integrated care on New Zealand’s Hepatitis C Community Clinic, found that both the care providers and patients had positive feelings about the integrated care models. Another study by Christianson & Moralejo (2009) on the use of integrated care in 4 clinics in British Columbia, Canada dealing with hepatitis found that the clinics were valued and viewed very favorably by the clients. Even though these studies were carried out on integrated care for hepatitis, it can be expected that it will produce the same results for the alcohol cirrhosis patients since they are both liver diseases.


Alcohol liver disease is a serious condition, especially in its severe stages of cirrhosis. Poor diagnosis of cirrhosis can easily lead to ascites, and the only option for the patient at this point could be a liver transplant. Alcohol liver disease is a common condition that can be prevented. It is mainly caused by excess consumption of alcohol by the patient, and within a period of 10 years from diagnosis, one may develop cirrhosis, which is the advanced stage of the disease. The best way to intervene against alcohol liver disease is by educating the general public about the dangers of excessive alcohol consumption. Adult nurses can play a significant role in educating the dangers of alcohol liver disease and how to prevent it. The nurses are in constant contact with the patients and their families and possess the knowledge and skills to educate them. In cases where the patient is in need of a transplant, there are always both legal and ethical factors that can play. Some people feel that the patients with cirrhosis inflicted damage on themselves and don’t deserve to receive a liver transplant, which is a very scarce resource. The doctors and caregivers, however, need to uphold the rights of the patients and give them the best possible medical outcome. There is also a linkage between the physical and mental health of chronic liver disease patients. From research, it has been proven that their integrated health care produces positive results for the patients. I strongly recommend that more health care facilities adopt the integrated health care models for patients with alcoholic liver disease. Health care facilities also need to encourage their nurses to educate people on the dangers of alcohol liver disease and how to avoid it.   




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