What to Do When Your End Stage Liver Disease Family Member Is Very Mean
Gastroenterology and hepatology
Research
Advanced chronic liver illness in the last year of life: a mixed methods report to understand how intendance in a specialist liver unit could be improved
Abstract
Objective To identify the limitations in palliative care provision in the last yr of life for people with liver cirrhosis and potential barriers to and enablers of palliative intendance.
Pattern Mixed methods, including a retrospective case note review, qualitative focus groups and individual interviews.
Setting A tertiary referral liver centre in the south of England (U.k.).
Participants Purposively selected case notes of 30 people with cirrhosis who attended the tertiary referral liver middle and died during an 18-calendar month period; a purposive sample of 22 liver health professionals who participated in either focus groups or individual interviews.
Primary and secondary outcomes Data collected from case notes included hospital admissions, documented discussions of prognosis and palliative care provision. Qualitative methods explored management of people with cirrhosis, and barriers to and enablers of palliative care.
Results Participants had high rates of hospital admissions and symptom burden. Clinicians rarely discussed prognosis or future care preferences; they lacked the skills and confidence to initiate discussions. Palliative care provision occurred late because clinicians were reluctant to refer due to their perception that reduced liver role is reversible, poor understanding of the potential of a palliative arroyo; palliative care was perceived negatively by patients and families.
Conclusions People dying with cirrhosis have unpredictable trajectories, but share a common pathway of frequent admissions and worsening symptoms as death approaches. The use of clinical tools to place the signal of irreversible deterioration and articulation working between liver services and palliative intendance may amend intendance for people with cirrhosis.
- palliative care
- cirrhosis
- hepatology
- mixed methods
This is an Open Access commodity distributed in accord with the Artistic Commons Attribution Non Commercial (CC BY-NC four.0) license, which permits others to distribute, remix, accommodate, build upon this work non-commercially, and license their derivative works on unlike terms, provided the original work is properly cited and the use is non-commercial. Encounter: http://creativecommons.org/licenses/by-nc/iv.0/
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- palliative care
- cirrhosis
- hepatology
- mixed methods
Strengths and limitations of this study
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The study is the outset to await specifically at how intendance is provided to people with advanced liver disease in the last year of life, with the aim of identifying barriers that limit a palliative approach to care.
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A mixed methods design enables exploration from different perspectives of the structural difficulties to providing end of life care to people with advanced liver disease.
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Findings suggest pragmatic means that supportive and terminate of life intendance tin be improved for people with advanced liver disease.
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As this study was conducted in 1 tertiary liver unit in the south of England, the findings may not exist generalised to other healthcare settings.
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The retrospective nature of the case note information limits the interpretation of the quantitative findings.
Background
Advanced chronic liver affliction (cirrhosis) is a growing international public wellness trouble and often affects people of working age.one Information technology is the tertiary almost common cause of premature death in the UK2; more people are affected by liver affliction with the increases in alcohol consumption, viral hepatitis and obesity.iii Most people dying from liver disease are not suitable for liver transplantation and, of those who are suitable, 20% will die before a donor becomes available.4 Living with cirrhosis may involve considerable symptom burden, and when liver failure ensues the prognosis is poor. Expiry may occur either after a long menstruation of decline with a fluctuant clinical flick, or may be sudden and unanticipated. In nigh cases, expiry from cirrhosis occurs in hospital.5
People with cirrhosis accept supportive and palliative care needs.six–9 Liver professionals acknowledge they have a function to play in this aspect of care,10 11 just feel that their skills are express and may exist inadequate to offer an effective palliative approach.ten 12 Referrals to specialist palliative care (SPC) may be necessary but palliative care provision is limited,13 and knowledge of prescribing in liver failure is needed. Shared intendance, defined as using the skills and knowledge of many wellness professionals who share joint responsibility for an individual's care, may be useful.14 Palliative care offered in parallel with optimised specialist and generalist care may benefit people with advanced cirrhosis.fifteen Ane difficulty is knowing the appropriate fourth dimension to make referrals and brainstorm shared care.x Further data to empathize how different specialities such every bit liver and palliative care services can work together may be helpful.xiv In this paper, nosotros report what we take learnt from exploring practise in a 3rd treatment centre for liver illness in north London, UK. We used mixed methodology, guided by Rapid Participatory Appraisal in which data collected from unlike sources relating to a specific healthcare provider are combined to draw both the service structure and potential care improvements in a specific health locality.xvi Using mixed methods, nosotros hoped to proceeds greater understanding of the limitations in the provision of palliative care for people with cirrhosis in the last year of life, and explore the reasons backside these limitations. This approach is usually used in health service research to empathise the complication of healthcare.17
We conducted a case note review, focus groups and qualitative interviews to explore:
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how healthcare in liver services is provided in the concluding year of life to people with avant-garde liver affliction (cirrhosis) from any cause to identify limitations in palliative care provision;
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challenges in providing palliative care provision in liver care and how this provision might be improved in hepatology.
Method
A mixed methods study, using a retrospective case note review, qualitative focus groups and individual interviews. Case note findings were used to quantify the types of healthcare inputs provided by the liver services to people in their last year of life and to place potential limitations in and barriers to the palliative care provided and a shared approach to care. The qualitative information identified reasons underlying these limitations and barriers, and highlighted potential enablers to improving intendance in this context.
Setting
A 3rd referral liver transplant centre in northward London Britain, providing both a core diagnostic service for all conditions affecting the liver and long-term management of patients with all severities of liver illness.
Procedure
Retrospective instance note review
As resources were limited, we purposively selected 30 people with cirrhosis from the 66 people who attended the tertiary referral liver heart and died betwixt April 2010 and September 2011. We aimed to ensure that our sample represented the spectrum of people attending the center and purposefully sampled according to age, gender and cause of liver failure.
We used a structured framework to extract data from patient records available from the middle for the 12-month period prior to death. We noted demographics, severity of liver disease at terminal access, cause of cirrhosis, transplantation status, physical and psychological symptoms, and health service employ in secondary intendance (inpatient admissions, hospital length of stay, intensive therapy unit (ITU) and liver-related procedures). We recorded documented evidence of discussions about prognosis and future preferences for care. We collected information on referrals to SPC, creation of care plans including evidence of advance care planning (ACP), resuscitation (practise non endeavor cardiopulmonary resuscitation (DNACPR)) status, preferred identify of death and actual place of death. Data were extracted by the research nurse (SD) and inputted into Microsoft Excel.
Qualitative data
Both focus groups and semistructured interviews were used to capture as many views of healthcare professionals as possible. All potential participants were first identified by a clinician (LG). The research nurse (SD) then contacted these participants face to face, by telephone or past electronic mail. Participants were given data about the report, outlining the office of the research team, and gave written consent prior to information collection. All participants took part either in 1 focus group or a semistructured interview (between July 2013 and May 2014), which were conducted in the liver middle.
Focus groups
Focus groups were used as a pragmatic method of gathering larger numbers of people and using the group dynamic to generate discussion about care at the end of life in cirrhosis.18 xix Purposive sampling was used to ensure the views of those at all levels of the liver team across the disciplines (doctors, nurses and allied health professionals) were captured. 3 focus groups were organised (each lasting 45–threescore min) and led past a research nurse (SD—Master's degree qualification and six years of qualitative research experience), with an observer (JL—senior wellness researcher with a PhD and 20 years of experience in qualitative/mixed methods enquiry) taking field notes and cofacilitating.
Topic guide
To guide discussions, a topic guide (online supplementary appendix 1) was adult by the members of research team (JL, SD, AM, DT, LG, KH and LJ) covering: challenges of providing care to people in the final year of life; their perception of patient and family understanding of liver disease; discussing prognosis and future care preferences; improving palliative intendance. This guide was developed pragmatically in the context of liver affliction, guided by the principles of palliative care.20 All focus groups were audiotaped and transcribed verbatim.
Supplementary file 1
Interviews
Professionals unable to attend the focus groups, were invited to have role in semistructured individual interviews. Nine interviews were conducted by SD (lasting 18–lxx min) using the topic guide, and were audiotaped and transcribed verbatim.
Data assay
Retrospective instance notes
Descriptive statistics were used to describe hospital admissions and service utilize, documentation of prognostic discussions and preferences for time to come care, and palliative care provision. Data were summarised to highlight limitations in palliative intendance service provision.
Qualitative information
A framework approach was used to analyse the transcripts,21 which were first read independently past two researchers (JL and SD). Themes were identified, from which a coding arrangement was developed and applied to the whole data set up systematically. Whatever disagreements in coding were resolved by consensus. In organising the data into appropriate themes, Microsoft Excel was used. The researchers considered themes independently and met to discuss the themes identified and how they were linked together by contextual factors. Independent analysis ensured validity and reliability of the themes and links identified. Findings were also shared with our clinical partners (AM, LG, DT and KH) in the research team to ensure that the findings were consistent with their experience of current clinical exercise. These themes were used to explain the limitations in palliative care provision found in the case notes, and to identify barriers and enablers to futurity palliative care for people with cirrhosis.
Ethical approval
Upstanding approval was sought, simply accounted unnecessary by the NRES Committee London—Due west London & GTAC (ref 14/LO/0799). NHS permission to carry the clinical case note review and the qualitative interviews with liver wellness professionals was obtained from the Imperial Gratis London Clinical Governance Lead for Hepatology and Palliative Care under the remit of wellness service improvement.
Results
Provision of healthcare in last year of life (case note findings)
Demographics and clinical characteristics (tabular array 1)
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Table i
Patient demographics and clinical characteristics
Patient demographics and clinical characteristics are provided in table 1. Our sample was predominately male person (n=20, 67%) with a median age of 59 years (IQR: 52–66; range 25–75), in which alcohol-related liver disease was the predominant diagnosis (n=sixteen; 53%). A Model for End-stage Liver Disease (MELD) score gives an indication of brusque-term mortality, and is used to prioritise candidates on the orthotopic liver transplantation waiting list. In 23 cases where data were available at concluding admission, our sample had a median (IQR) MELD score of 23 (16.5–23), suggesting a 19.6% chance of dying in the next 3 months.22 Xix (63%) people were non considered for liver transplant due to poor health, iv were on the transplant waiting list and three had previously received a transplant. 8 (27%) people with cirrhosis had been referred to the third heart from 'out of area' hospitals either for a liver transplant assessment, or for specialist treatments, such as a transjugular intrahepatic portosystemic shunt (TIPS) or intensive direction of bleeding.
The people in our sample were highly symptomatic (table two). All were symptomatic 3 months before decease, presenting with ascites (n=22, 73%), extensive peripheral oedema (n=20, 66%), severe fatigue and weakness (northward=20; 66%), and pain (north=13; 43%). In the last month of life, our participants presented with an average of 14 concrete symptoms per person. The majority (northward=nineteen, 63%) were noted to have symptoms of hepatic encephalopathy, such as defoliation, disorientation and agitation.
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Table two
Signs and symptoms during the final 3 months for the thirty patients
Wellness service use in tertiary care
Our sample of 30 had a median of three inpatient admissions (IQR: ii–v) per person in the terminal year of life, and a median length of stay of 31 days (IQR: nineteen–55). Seventeen (57%) people were readmitted within 30 days of discharge. The frequency of admissions increased for most people (n=29; 97%) in the last three months of life. Nineteen (63%) people had more than 1 admission in the month before decease, during which the median number of admissions was two (IQR: one–3). Of the 78 admissions precipitated by cirrhotic complications, most required invasive procedures, such as paracentesis (n=53/78, 68%), claret transfusions (n=13/78, 17%), endoscopic variceal banding (n=4/78, 5%) and TIPS (n=4/78, v%). During these admissions, each participant was seen in the last year of life by a mean of 3 dissimilar liver consultants (range 1–6). Nine (30%) people were regularly reviewed by the hospital nurse-led patient-at-chance team (Office), to decide whether to escalate or de-escalate their treatment. Six (xx%) people with cirrhosis required handling in the intensive therapy unit (ITU) during which three patients died.
Documentation of prognosis, futurity care discussions and palliative care provision
Liver consultants recorded having discussed prognosis mainly with family members (northward=23, 77%); discussions occurred very late, in sixteen (53%) cases≤34 days earlier the person died. Liver doctors recorded fewer discussions with patients about understanding of their disease or hereafter intendance preferences (n=xvi, 53%), most of which occurred 1 calendar month earlier death (n=9/16; 56%).
Although most people (n=26; 67%) had a DNACPR decision recorded in their medical notes, this was completed by medical personnel, with limited consultation with either the person with cirrhosis (n=v, 17%) or their family member (n=6, 20%). In 7 cases, the liver squad had to be alerted about completing a DNACPR by other clinicians such equally the Role team (n=iv), ITU (n=two) or the emergency section (n=1). About people (n=19, 63%) had no discussions with doctors about their preferred identify of intendance.
Most people with cirrhosis (n=21; lxx%) were referred to SPC a median of 5 days before death. Twelve (40%) people with cirrhosis documented as deteriorating were still receiving active treatment up until their death. For well-nigh people, death occurred in hospital (n=25; 83%), 3 died in ITU. The remaining v people died either at dwelling house (n=3; 10%) or in a hospice (n=2; 7%). Only 5 people from the sample had clear discussions with health professionals almost place of death; two of these died in the place of their choice (one at home and the other in infirmary).
Challenges to and enablers of provision of palliative care (qualitative data)
Demographics of liver clinician sample
Thirteen liver health professionals took part in three focus groups (FG; FG1: iii doctors, ii liver transplant nurses, a dietician and a pharmacist; FG2: three ward nurses and a healthcare assistant; FG3: ii ward nurses). Nine wellness professionals took role in semistructured interviews (five doctors, two senior nurses in hepatology, a clinical nurse specialist in palliative care and an alcohol liaison nurse). No demographic information was collected for the liver clinician sample other than their field of study.
Central findings
Initial assay illustrated that liver clinicians recognised that although their patients were in poor health, they did not address quality of life bug with them and palliative care options were only considered with patients who raised this topic themselves. Further assay identified 5 emergent themes which illustrated why liver clinicians focused on reactive treatment for people at the expense of palliative care: unpredictable trajectory of liver disease, direction of patient treatment expectations, clinician/patient perceptions of the palliative care role, poor continuity of care, perceived lack of skill and confidence.
Unpredictable trajectory of liver disease
The perceived power of the liver to recover part made information technology difficult for doctors to estimate the indicate of irreversible liver decline, and so provided doctors with hope that trying different treatments would promote recovery, even with patients on the wards who were imminently dying. Nurses felt that role of this difficulty was the brusk periods that doctors spend with patients in contrast with the ward nurses, who provide continuous care and were confident in identifying those imminently dying. Yet, nurses considered that cessation of active handling was the responsibility of doctors every bit main clinical decision makers.
We (ward nurses) have abiding contact with patients… enables us to identify those patients who are both aware of their deterioration and want to die at domicile to be fast tracked to specialist palliative intendance. Ward nurse, Nurse focus group 1.
Management of patient expectations
Doctors' accent on active treatments is reinforced past their own perceptions of patients' treatment expectations. Office of this expectation may exist reflected by the patients' younger ages, who doctors experience desire life at all costs. Furthermore, as many patients are referred past secondary care 'out of area' (as illustrated in our case notes), clinicians perceive these patients see referral to the tertiary liver eye every bit a last hazard to 'cure' their liver disease. This in plough, reinforces clinicians' focus on active treatments, at the expense of discussing prognostic problems.
We probably don't do plenty of it (hash out future care preference), because most of the patients at a given fourth dimension are non willing to engage with that question. The median age of patients is 53, then we are non talking about an 80 twelvemonth old who has lived their life to the full. We are talking near people who all the same want life. (Consultant hepatologist 1, interview)
Patients' unrealistic expectations, and their express noesis and understanding of their own disease, presented doctors with difficulties in managing these expectations and deciding what treatment options to pursue.
They (patients) are oft referred extremely late, total of expectation merely to be told there'southward nothing we can practise. The difficulty is, what do you then practice with that patient? Do you allow them become dorsum to the referring trust or secondary care, how exercise you know that they are going to get palliative intendance or the handling that they demand. (Consultant hepatologist two, interview)
Misunderstanding of palliative care
Clinicians perceived that patients and their family members saw referral to palliative care negatively, as a move suggesting that clinicians had 'given upwardly' on the patient. They felt that patients and families did not sympathise what palliative care could offering in terms of symptom control and psychosocial support, instead seeing palliative care as a service for people at the very terminate of life, equally illustrated by this senior nurse.
Nosotros've got a patient on the ward whose family are very opposed to palliative care, just wanted agile handling. The patient has had repeated admissions, even if the family can only take her for some other actress few months. The nurse tried to tell them it is not merely the concluding weeks and hours (input from palliative care), information technology can be longer than that and the palliative team take a lot to offering y'all fifty-fifty now. (ward senior nurse, interview)
Although virtually liver clinicians saw a role for palliative care, the contend on its utilisation centred more on understanding when a referral to palliative care was considered advisable. Most had very express experience in working with palliative intendance and were unsure of the best time to refer. This was further compounded by the difficulty of estimating the bespeak of irreversible liver deterioration and the lack of clinical tools and guidelines to support them with this process.
Would like to refer much before, only demand to have an understanding at the betoken that specialist palliative care would like involvement. (Consultant hepatologist, Multi-disciplinary focus group)
Poor continuity of intendance
Liver clinicians felt the lack of adequate data systems and the rotation of medical staff (our case notes showed that each participant saw at least three liver consultants over the year), contributed to 'poor continuity of care'. This lack of continuity is demonstrated when handling plans agreed with one consultant can be changed by another consultant due to a lack of shared information.
This rotation of staff causes bug equally some patients are treated and patched upward, simply come in under another consultant when readmitted and handling happens again. However, the system does not allow for data to be exchanged nearly what exact changes have occurred in their condition. (Consultant hepatologist 3, interview)
Perceived lack of skill and conviction
Both doctors and nurses perceived they lacked skills and conviction in engaging in discussions virtually prognosis or palliative care with patients or family members. On liver wards, this was further compounded by a lack of private space to discuss sensitive topics.
Enablers for improved palliative care
Liver clinicians suggested strategies to enhance both continuity and integration of palliative care and liver services, such as joint liver and palliative care clinics for people with decompensated liver disease and multidisciplinary squad case conferences to coordinate care and treatment for those patients frequently admitted. Such initiatives would enhance mutual understanding across specialities of liver-specific symptom direction and the timing of referrals. To support liver clinicians in identifying patients suitable for early on palliative care back up, advisable clinical tools with relevant guidelines demand to be identified.
Discussion
Central summary
Our findings reflect the complicated clinical picture surrounding the provision of care of people with cirrhosis in their terminal year of life. We demonstrate that patients have a high symptom burden, increasing number of admissions in their last 3 months of life and a focus on agile, disease-directed treatments. Every bit with previous studies,12 xiii we highlight poor palliative intendance provision, in which discussions about prognosis and resuscitation orders were only raised in the final few days of life and referrals to palliative intendance were made very close to death. We constitute that liver clinicians have difficulties in initiating discussions regarding prognosis, do not engage in parallel planning for potential deterioration equally well equally recovery and have a limited knowledge of palliative intendance.
Studies suggest that dubiety is an important barrier to anticipatory care planning in advanced liver disease.12 Our qualitative data further illustrate how v fundamental factors collaborate as barriers to palliative care. Although liver clinicians may wish to refer patients to palliative care earlier, agile treatment is usually the de-facto selection unless patients themselves specifically raise the topic. The difficulty of identifying the indicate of irreversible liver deterioration, patients' expectations of finding a cure, together with liver clinicians' perceived lack of confidence and skills in addressing palliative care issues enabled a focus on active treatment. A farther barrier is the lack of contact and experience that liver clinicians accept of working with palliative care specialists. This prevents them from understanding what palliative care can offer, and prevents palliative care clinicians from establishing earlier contact with patients which might enable them to become familiar faces for patients and families. This culture of active treatment may stem from tertiary centres beingness seen equally at the forefront of technical innovation.
Clinical implications
Our findings advise that lack of knowledge virtually the role and potential benefits of palliative care may contribute to the late referral of liver patients to SPC. The formation of liver clinics specifically for people with decompensated liver failure, with articulation input from liver and palliative care specialists is recommended. This may promote agreement across specialties, an integrated and timely approach to care, formulation of treatment plans and a reduction in unplanned inpatient admissions to the liver service.12 It may also improve symptom command and enable clinicians to engage in discussions almost prognosis and hereafter care preferences with patients and families at an earlier stage. Previous studies have shown that early on referral to SPC may reduce the rates of expensive hospitalisation, especially in the last month of life.23 Such service developments could be explored, in line with guidance set past the 'End of life intendance good practice guide'.24 Consideration should exist given to the care philosophy in a third liver transplant centre, where many liver clinicians are reluctant to take that active interventions have limited patient benefit. Qualitative information point that liver clinicians found information technology difficult to identify the point of irreversible liver deterioration; our case note findings suggest that inpatient admissions and symptoms increase in frequency in the last iii months of life. The introduction of clinical tools such as the Supportive and Palliative Indicators Intendance Tool25 may support clinicians to identify when is timely to refer to palliative care, such every bit the 'betoken of irreversible deterioration of liver function'.
Strengths and limitations
Our study explores care in advanced liver disease from unlike perspectives, only we accept our methodology limits the generalisability of our interpretation. Our case note data were retrospective and limited by the quality of recording in medical notes. Many in our case note sample were referred from other hospitals and did non include data recorded at these sites. Due to fourth dimension constraints, nosotros reviewed a purposive sample of case notes of those who died, so in that location is a potential for option bias and error in the notes that were reviewed. Our example note sample only reflects patients who died during follow-upwards and not those who were still alive, or who had a transplant. This is important since these patients are also oftentimes recipients of palliative care. For our qualitative arm, the health professionals were recruited from one infirmary site and due to both fourth dimension constraints and the limited pool of participants bachelor, information technology is possible that theme saturation was non fully achieved. We did not explore the views of close family members and informal carers in this report and may have missed important insights on experiences of living and dying with liver disease and how care might exist improved. Our findings reflected practice in a 3rd liver transplant specialist unit in i country; while clinical problems are likely to be similar in other settings, organisational issues and person-centred attitudes volition vary across other healthcare systems. Nevertheless, our exploratory findings practice provide new insights into how care towards the end of life could be improved in people with cirrhosis, which deserve further exploration using more than robust methodology.
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Source: https://bmjopen.bmj.com/content/7/8/e016887
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