Impact of an Early Goals of Care Discussion on Patient Satisfaction and Quality of Life among Seriously Ill Patients Admitted to the Medical Wards – A Quality Improvement Project

Problem

In goals of care discussion (GOCD), the clinician elicits and understands the goals, preferences, and values of the patient and will work to align the treatment plans with the patient’s choices and wishes. At present, a structured GOCD is not a part of the standard of care for seriously ill patients admitted to the medical wards. As a result of this, most often, patients’ wishes are not known, not documented, and often not respected.

In most hospital settings, the primary care physicians who are involved in end-of-life (EOL) care do not discuss the patient’s goals of care until the last 48 hours of life, when very often their capacity to make decisions has been lost, resulting in the patients being cared for in a way that they would not have chosen to.^[1,2]

In the era of evidence-based medicine, currently, the majority of the focus is being given to cure-driven interventions, with very little importance being given to the quality of care provided. With the focus on improving the quality of care, it is important to understand what outcomes of health would be acceptable for the patient and to clarify the patient’s values.

Available knowledge

There is growing evidence stating that GOCD should be conducted early in the course of the disease. GOCD should ideally be a part of every clinical encounter. The initial conversation carried out early during the hospital stay should be aimed at understanding the patient’s goals and wishes. This should be followed by a more detailed GOCD later on. Notably, healthcare providers infrequently engage patients and families in such conversations.

A qualitative semi-structured interview-based study by Selman et al. among patients with chronic heart failure in a tertiary care hospital in the UK showed that none of the patients included in the study had discussed EOL preferences with the treating physicians, and none of them were aware of the alternative future choices available. The patients reported that they were not informed about the implications of their diagnosis. Data indicated a high prevalence of psychological stress among the participants.^[3]

Worldwide, chronic diseases are a major contributor to morbidity. An interdisciplinary team-based approach is the ideal mode of care delivery for these patients with chronic illnesses. An observational study among patients with advanced COPD revealed a high symptom burden adversely affecting the overall quality of life (QOL) of these patients. Early palliative care involvement, by providing comprehensive symptom management and addressing psychological distress, may yield substantial benefits for these patients.^[4]

Evidence suggests that addressing communication skills is directly linked to the quality of patient-centered care. To ensure quality care, it is important for healthcare providers to focus on achieving proficiency in key communication skills. Several studies are highlighting the importance of an effective GOCD. In a multi-institutional cohort study by Mack et al., it was shown that patients with advanced cancer who have discussed their EOL preferences with the physicians had a better understanding of the nature of the illness. Most of these patients chose symptom-directed care over life-prolonging therapies. The care they received was, therefore, consistent with their wishes.^[5]

Numerous data exist to support the effect of EOL discussion on QOL and caregiver burden. A study by Wright et al. showed that patients who did not have an EOL conversation received much more aggressive medical treatment in their final week of life, which was associated with worse patient QOL near death. Their bereaved caregivers, in turn, experienced more regret and worse QOL. The association between EOL discussion resulting in less aggressive treatment at the EOL was noteworthy in the study.^[6]

Patient and caregiver satisfaction with the care provided is an important outcome measure in assessing the quality of care. In a cross-sectional study by Stajduhar et al., the ‘CANHELP caregiver bereavement questionnaire’ was used to assess the bereaved family members’ perception of the quality of EOL care. The study emphasised that understanding the family members’ perception of quality of care helps to determine specific domains of care that need improvement.^[7]

Rationale

Introducing a standardised approach to sensitive conversations through a structured GOCD will improve the healthcare utilisation and aid in medical decision making. A better-informed patient may be more capable of avoiding unnecessary aggressive interventions at the EOL. Determining the goals of care for seriously ill patients is a core component of the ‘Clinical Practice Guidelines for Quality in Palliative Care’.^[8] Expert communication to establish the goals of care should ideally be provided by the primary treating physicians, in the same way, that hypertension and diabetes mellitus are more often treated by primary care physicians rather than by cardiologists or endocrinologists, thus leaving palliative care specialists to provide expert opinion on the very complex cases only.^[9]

Aim statement

We aimed to study the impact of a structured GOCD on patient satisfaction, caregiver satisfaction and QOL among seriously ill patients admitted to the medical wards.

Context

A non-randomised before and after study was done as a part of the quality improvement project. Three consecutive cohorts of patients were interviewed through a process of three plan-do-study-act (PDSA) cycles, each of 6 weeks duration, in the department of general medicine in a tertiary care hospital in South India in the year 2018–2019.

Intervention

The study intervention consisted of clinician education and training in conducting GOCD. Internal medicine junior residents (JRs) were trained through a face-to-face training session conducted by a trained palliative care physician and through an online training program using capc.org modules, at the end of which assessment was done, and a certification of credit was provided to the JRs. The core training methodology included case-based discussions, training in communication about serious illness and clarifying goals of care.

A seriously ill patient was defined as: ^[10-12]

• Age ≥55 years and 1 or more of the following advanced chronic illnesses:

• Chronic obstructive pulmonary disease (Two of the following: baseline arterial partial pressure of carbon dioxide >45 mm Hg, cor pulmonale, episode of respiratory failure within the preceding year)

• Congestive heart failure (New York Heart Association Class IV symptoms and left ventricular ejection fraction <25%)

• Cirrhosis (confirmed by imaging studies or documentation of oesophageal varices) and 1 of the following: Hepatic coma, child class C liver disease and child class B liver disease with gastrointestinal bleeding

• Cancer (metastatic cancer or stage IV lymphoma).

  OR

• Any patient ≥80 years of age admitted to hospital from the community due to an acute medical condition.

  OR

• You answer ‘no’ to the following question: ‘Would I be surprised if this patient died within the next year?’

All patients who fulfilled the inclusion criteria were enrolled into the study by convenience sampling strategy after obtaining written informed consent.

We excluded patients with no family/caregiver and patients who were expected to die/be discharged within 24 hours.

Outcome variables assessed

To assess and compare patient and caregiver satisfaction and QOL among seriously ill patients admitted to the medical wards before and after the introduction of a GOCD.

Process measure

Through a process of three PDSA cycles, we assessed the impact of GOCD on patient and caregiver satisfaction and QOL of patients with serious illnesses admitted to the medical wards. The CANHELP Lite questionnaire was used to measure patient and caregiver satisfaction of care in the three PDSA cycles, and for assessment of QOL, the World Health Organization QOL Brief Version (WHOQOL-BREF) questionnaire was administered to the patients in all three PDSA cycles, and the difference in scores was compared. The details of the three PDSA cycles are given below:

PDSA 1

We conducted a baseline audit (interview and audit of case sheets) to check whether GOCD is occurring in routine care of seriously ill patients. The eligible patients and their caregivers were interviewed using the CANHELP Lite questionnaire on Day 6 of admission/day of discharge (if discharged within 6 days), whichever is later. Their QOL was assessed using the WHOQOL-BREF questionnaire. This served as baseline data, wherein patient and caregiver satisfaction assessment and QOL assessment were done without the introduction of GOCD.

PDSA 2

JRs were trained in conducting GOCD. Execution of the structured GOCD among patients fitting inclusion criteria over 2 weeks. The discussed GOC was documented in the patient’s medical record. Caregiver and patient satisfaction were assessed on day 6 of admission/day of discharge (if discharged within 6 days) using the CANHELP Lite questionnaire. The patient’s perceived QOL was measured using the WHOQOL-BREF questionnaire simultaneously. Analysis of the data was conducted.

PDSA 3

The main aim of the PDSA 3 cycle was to look for the sustainability of the intervention. Patient and caregiver satisfaction and QOL scores were assessed among eligible patients over 2 weeks.

Statistical methods and analysis

To assess patient and caregiver satisfaction among the participants, the CANHELP Lite questionnaire was used. Satisfaction with the care received among patients and caregivers was scored on a Likert scale of 1–5 points.

Before the initiation of the study, Cronbach’s alpha score was calculated for internally validating the CANHELP Lite questionnaire. The higher the reliability coefficient, the more accurate (internally consistent) the measure. According to the literature, coefficients of 0.70 or higher are desirable. Our analysis of internal consistency reliability revealed an alpha of 0.708 for the patient satisfaction questionnaire and 0.864 for the caregiver satisfaction questionnaire.

Calculation of QOL scores

Permission was obtained from the World Health Organization to use the WHOQOL-BREF questionnaire as a study stool. During each of the three PDSA cycles, the QOL was assessed using this questionnaire while simultaneously assessing the satisfaction scores among seriously ill patients admitted to the medical wards. This 26-item study tool was used to measure the following four domains of QOL namely, physical health, psychological aspects, social relationships and environment. WHOQOL-BREF study tool consists of four domains. The mean score of individual items within each domain gives the domain score. Mean scores are then multiplied by 4 to make domain scores comparable with the scores used in the World Health Organization QOL-100. Domain scores are scaled in a positive direction with higher scores denoting better QOL.

The collected data were coded and analysed using the Statistical Package for the Social Sciences (version 17.0). Patient satisfaction scores were compared across the three PDSA cycles using an analysis of variance. Descriptive analysis was performed, and the scores were expressed in mean (with standard deviation) and proportion. P < 0.05 was considered as a statistically significant difference.

Ethical consideration

The study was registered under the Clinical Trial Registry of India (Reg no: CTRI/2018/11/016307). The study commenced after the study was approved by the Institutional Ethics Committee (IEC KMC MLR 09–18/245).

Interpretation

Addressing goals of care results in overall improvement in the patient and caregiver satisfaction with the care provided. Beyond the estimation of satisfaction scores and QOL assessment, we introduced the concept of GOCD as a routine part of the assessment of seriously ill patients admitted to the medical wards.

Strengths

Internal medicine JRs were trained in conducting GOCD, thus giving our study an added advantage over others, in which investigators have often relied on referrals to palliative care experts for GOCD. We used validated structured clinical interviews for assessing patient and caregiver satisfaction and QOL scores. It is among the very few studies conducted in India on GOCD, and the results in our study match the outcomes from developed nations, thus highlighting the universal nature of the importance of shared decision-making and patient autonomy.

Limitations

Although GOC was discussed explicitly with the patients, we did not audiotape the conversations of GOCD. It was not feasible to follow up on the same patient population beyond one PDSA cycle. Although we assessed the impact of GOCD on QOL, we did not assess its impact on survival, as we did not have a longitudinal follow-up of our patients. This was a single-centre study thereby limiting generalisation of the results to other healthcare settings.