Abstract
With Japan’s rapidly aging population, the incidence of heart failure (HF) is increasing dramatically, and there is a need for home palliative care to prevent rehospitalization for patients with advanced HF. Advance care planning (ACP) is considered an integral process of palliative care, and information and communication technology systems have recently been used to share end-of-life issues among the palliative care team. We present the case of a patient with advanced HF who avoided rehospitalization after the provision of home-based intervention and palliative care using information and communication technology to share the ACP process among the palliative care team. Four months after the patient’s death, a questionnaire that identified only the patient and not individual family members showed that the patient’s family was satisfied with the at-home end-of-life care.
Keywords
Introduction
With Japan’s rapidly aging population, the incidence of heart failure (HF) is increasing dramatically. Although the treatment for HF has recently progressed, the Japanese registry of HF revealed high incidence rates. The study showed cardiovascular death and rehospitalization rates for HF of 7.1 and 21.1 per 100 person-years, respectively. 1 Thus, there is a need for home-based interventions and palliative care for patients with advanced HF to prevent rehospitalization for decompensation. 2
Home-based palliative care is provided most often to patients with cancer, 3 and is strongly associated with at-home death. 4 Advance care planning (ACP) is defined as a process of discussion over time that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care.5,6 Current clinical practice guidelines indicate the importance of discussing palliative and future care strategies with people with chronic HF and their caregivers to improve quality of life, reduce pain and suffering, and confirm the intention of resuscitation. The latter may include discussing deactivating devices, such as implantable cardioverter-defibrillators or long-term mechanical circulatory support.2,7 However, although both the USA and European guidelines recommend ACP, many people with HF have no documented ACP.8,9
Information and communication technology (ICT) tools can be used to access a wide variety of technological solutions for communication, including text messaging, gathering and monitoring data, and diagnosis and treatment at a distance. In the medical care field, ICT can facilitate long-term care; professionals can share their ideas using ICT, leading to mutual understanding and education. With the development of ICT, recently developed mobile device health applications have been used in at-home treatment of chronic HF patients. Home-based cardiac rehabilitation using ICT for HF patients with physical frailty improves exercise tolerance. 10 However, studies have not evaluated the effectiveness of ICT for home palliative care of advanced HF patients. ICT systems have recently been used in palliative care to share patient symptoms, caregiver burdens, and other end-of-life issues among the palliative care team. ICT-driven care can reduce the need for emergency transportation and lead to an increase in end-of-life care in nursing homes. 11 Although a unified view of the effect on medical expense reduction by ACP and ICT was not shown in a recent study, the limited data indicated that net cost savings may be realized with an ACP. 12 Additionally, home-based support service using ICT achieved cost savings in another study, with considerable benefits for frail older people and their caregivers. 13
Herein, we describe a patient with advanced HF who avoided rehospitalization after receiving home-based intervention and palliative care using ICT to share the ACP process among the palliative care team.
Case Description
An 86-year-old man was diagnosed with congestive HF resulting from ischemic cardiomyopathy after coronary artery bypass graft surgery. His left ventricular ejection fraction was 20%, and he was hospitalized twice for decompensated HF. Laboratory tests performed in the outpatient clinic showed elevation of the N-terminal pro-B-type natriuretic peptide (NT-proBNP) concentration to approximately 1300 pg/mL and a decrease in the estimated glomerular filtration rate to 30 mL/min/1.73 m2. His condition remained stable for 6 months after the last hospital discharge until he required an urgent home visit for HF exacerbation triggered by pyelonephritis. At the home visit, orthopnea with a low oxygen saturation was identified, with delirium and an increased NT-proBNP concentration of 3356 pg/mL. Home oxygen therapy was initiated immediately, and his symptoms improved gradually over 2 weeks, as assessed by a physician during several home visits. Home-based intervention was then initiated because his condition could worsen easily. Thereafter, he was seen by a physician, nurse, and physical therapist at 2–3-day intervals. He was treated for HF on the basis of his symptoms, body weight, and clinical findings, which included a standard blood examination and NT-proBNP concentration.
The patient lived with his wife and son. The patient and his wife were capable of end-of-life care decisions, despite their advanced age. The medical providers used an ICT system called Igeta-net, established by Nagoya University, to share a patient’s condition as well as their ACP documents. ICT was used to share this information promptly and routinely with five medical providers: a physician, nurse, physical therapist, care manager, and care worker. ACP documents were labeled “ACP” and shared among the medical providers.
Laboratory parameters were re-measured 6 months after initiating the intervention. The NT-proBNP concentration and estimated glomerular filtration rate were unchanged compared with the previous values. The patient’s functional status, degree of depression, nutritional status, and cognitive status also improved, as did the stress level scores of the caregiver (Table 1). After starting the home-based intervention, the NT-proBNP concentration did not worsen, and the patient avoided rehospitalization for approximately 1 year.
Changes in Laboratory Parameters and Multidimensional Assessment Scores
Multidimensional assessment was performed using standardized instruments: the Barthel Index for the person’s ability to complete activities of daily living, the Geriatric Depression Scale to detect and evaluate possible depression in older adults, the Mini Nutritional Assessment to assess nutritional status in older patients, the Mini-Mental State Examination to identify cognitive impairment, such as dementia, and the Zarit Burden Interview, a popular caregiver self-reporting measure to evaluate the caregiver’s level of stress.
All scores improved after 6 months.
HBI, home-based intervention; NT-proBNP, N-terminal pro-B-type natriuretic peptide; eGFR, estimated glomerular filtration rate.
When the patient’s condition was stable, a physician wrote the following comment using the ICT system: “The patient and his wife did not wish for the patient to be hospitalized when the HF worsened. However, the son stated that he would consider hospitalization for HF exacerbation for his father under some circumstances, although he would respect his parents’ wishes.” However, HF exacerbation progressed, and the NT-proBNP concentration increased again when pyelonephritis recurred (Fig. 1). Subsequently, numerous messages were exchanged among the medical care providers.
Time course of drug use and doses, and changes in the N-terminal pro-B-type natriuretic peptide concentration, creatinine concentration, and the patient’s body weight before and after the home-based intervention in the present case. HBI, home-based intervention; ARNI, angiotensin receptor blocker-neprilysin inhibitor; HOT, home oxygen therapy; NT-proBNP, N-terminal pro-B-type natriuretic peptide; Cr, creatinine; BW, body weight.
Home-based care was stressful for the patient’s wife because of the patient’s physical distress and decreasing activity level. A nurse wrote the following comment using the ICT system: “The patient’s nocturnal delirium disturbed his wife’s sleep. The son vacillated between continuing home hospice care and hospitalization because home care was difficult for his mother.” To assist with these issues, the medical staff was instrumental in providing adequate breathlessness control for the patient and emotional support for both the patient and his family. A physician wrote the following comment using the ICT system: “The patient and his family were provided details explaining the palliative care process. The patient was prescribed oxycontin tablets for intolerable distress and risperidone tablets for delirium.” The modified Borg scale to rate perceived breathlessness decreased from 7 to 3 with these interventions in 5 days. A care manager wrote the following comment using the ICT system: “The frequent visits of a doctor and nurses to address the patient’s deteriorating condition provided comfort for the patient and his family.”
Just days before the patient died, a physician wrote the following comment using the ICT system: “His family was provided with explanations of the expected changes in the patient’s condition until death. The son accepted that the patient’s death was imminent. The patient’s wife said that she wanted to care for her husband at home until his death.” The patient died at home surrounded by his family in accordance with his wishes 1 month after the exacerbation of HF. Thirty messages had been exchanged among the medical providers using ICT during the intervention.
Four months after the patient’s death, his family members were sent a self-reported questionnaire that identified only the patient and not individual family members. 14 The questionnaire was approved by the institutional review board committee of the Aichi Medical Association. The family was very satisfied with the outcomes of the structure and process of care (Care Evaluation Scale) and achievement of a good death (Good Death Inventory) (Tables 2 and 3). The family was also completely satisfied with items such as “Help with decision-making for the patient,” “Family burden,” “Being free from physical distress,” and “Receiving sufficient treatment.”
Care Evaluation Scale
Good Death Inventory
Discussion
In this article, we described the clinical course of a patient with advanced HF who avoided rehospitalization following a home-based intervention and palliative and supportive care using ICT to share the ACP process among the medical providers.
Patients with chronic HF are usually ill for many months or years, with occasional acute exacerbations that are generally managed with hospitalization. Deterioration of the patient’s condition may improve in the short-term. However, patients who leave the hospital often experience a further decrease in cardiac function and gradual deterioration in their health and functional status. 15 Physicians, nurses, and physical therapists were able to manage HF exacerbation in our patient for 1 year through home-based intervention using ICT to share the details of the patient’s condition. We speculated that the preservation of cardiac function by a continuous home-based intervention had a beneficial effect on our patient’s functional status 6 months after initiating the intervention.
In older patients with HF, home-based management is associated with improved quality of life. 16 Multidisciplinary home management may have positive effects on the education of the patient and the family on the nature and course of the disease, beneficial lifestyle habits, and self-management, with an emphasis on active patient and family involvement in care. Importantly, low patient functional status is associated with a greater family burden in home-based palliative care. 17 For our patient, the caregiver burden score improved 6 months after initiating the home-based intervention, and the family reported in the questionnaire that they completely agreed that the family burden was well-managed.
The World Health Organization estimates that over 19 million adults require end-of-life palliative care globally. 18 Additionally, the prevalence of adults who require end-of-life palliative care is higher among those with cardiovascular disease (38%) versus cancer (34%). However, more than half of hospitalized HF patients died without palliative care. 19 The European guideline suggests morphine administration for refractory dyspnea as palliative care in patients with advanced HF. 7 However, morphine should be avoided in patients with renal failure because of serious adverse effects, such as respiratory depression caused by the accumulation of the active metabolites of morphine. In our patient with renal failure, we could not control breathlessness at rest with oxygen therapy and cardiac medication. Therefore, we initiated oxycodone, and his symptoms improved.
A recent systematic review of ACP in patients with HF showed that the implementation of ACP led to an improvement in the patients’ degree of depression. 20 However, the effect of ACP on the concordance between patients’ preferences and end-of-life care, which is a main objective of ACP, remains unclear. This is because the quality of the evidence for each study outcome was low owing to the small number of participants and variable follow-up periods and types of ACP intervention. Notably, implementing an ACP intervention when the patient is not ready for end-of-life care diminishes a patient’s hope and does more harm than good in patients with advanced cancer. 21 In most ACP studies, the ACP intervention was implemented by trained facilitators who were not concerned with patient treatments. If the medical providers in charge of treatment and care could make time for home-based ACP intervention with the patient and their family, this might enable better communication between the medical providers and a seriously ill patient.
Many symptoms of advanced HF, such as breathlessness, pain, and fatigue, make it difficult for caregivers to perform home-based palliative care. 22 Furthermore, it is more difficult to predict the prognosis of patients with advanced HF versus cancer because of differences in end-of-life illness trajectories. Although each HF exacerbation may result in death, the patient typically survives many such episodes. 15 Consequently, the patient and caregivers hesitate to accept end-of-life care. Therefore, it is important to share information about the condition of patients with advanced HF, for whom exacerbations are common, as well as the medical care wishes of patients and their families, with home-care medical providers.
Various communication tools are available, such as phone calls, electronic health records (EHR), and ICT to share patient information from the home-based intervention. A phone call is useful to immediately report an acute HF exacerbation. However, home medical providers may not obtain accurate information about the ACP process from phone calls because it is not always possible for callers to leave a message. EHRs are intended to enable physician access to the most current patient health information at the appropriate time in the clinical process. Nevertheless, the majority of ACP documents for patients with chronic and serious illnesses are not easily accessible. Lack of standardization of ACP documents is common, and changes in patients’ care preferences are not easily accessible in the EHR. 23 In contrast, an ICT system can be used to share patient symptoms, caregiver distress/burden details, and other end-of-life issues with home medical providers using mobile devices, which could lead to earlier interventions to enhance care for both patients and caregivers.
An ICT system was used for ACP intervention in this study. This system enabled management of the patient’s worsening condition and the caregivers’ levels of distress. The questionnaire showed that the family completely agreed that they were provided with help with decision-making for the patient and family and that the patient received sufficient treatment.
The ACP intervention in this case was performed during end-of-life care, but Sudore et al. showed that the ACP is a process of discussion over time that supports adults at any age or stage of health. 5 We are currently aiming to increase awareness about ACP through cancer education in elementary and junior high schools in Matsudo City and Nishio City. The students are assigned homework that informs the family of the details discussed in the class, and students are instructed to discuss the following with their family members: “How and where do you want to spend the rest of your life if you have half a year to live in the doctor’s opinion?” The results of these activities will enable evaluation of the current state of awareness of ACP within families. A student’s intention to participate in end-of-life care conversations is confirmed by each student’s family before participation. To date, we have not experienced students who feel distress after witnessing end-of-life conversations.
As previous studies of ACP for patients with HF evaluated various ACP interventions, such as structured discussion or ACP as part of palliative care, and the studies used different follow-up periods, the effects of ACP are uncertain. 20 More research on palliative care and ACP is needed for people with advanced HF.
Footnotes
Acknowledgments
The palliative care team members were Yukari Ina, Ayumi Naito, Sachiko Asaoka, Miho Aoyama, Atsushi Hattori, and Ryoichi Tsuda.
Author Disclosure Statement
No competing financial interests exist.
Funding Information
No funding was received for this article.