Homecare and the COVID-19 pandemic – Experience at an urban specialist cancer palliative center
Correspondence Address: Source of Support: None, Conflict of Interest: None DOI: 10.4103/IJPC.IJPC_151_20
Source of Support: None, Conflict of Interest: None
Keywords: Continuity of care, COVID-19, home care, palliative care
Access to palliative care in itself is frugal, in the best of times. With the COVID-19 pandemic wreaking havoc worldwide, the need for palliative care has risen exponentially, and the availability remains the same, creating a major demand-supply rift. The World Health Organization (WHO) has issued guidance on how to maintain essential health services during the pandemic, highlighting immunization, maternal care, emergency care, and chronic diseases among others, but there was no mention of palliative care.
Cancer palliative care patients especially are facing several challenges in terms of difficulty in accessing medical care in event of increased symptom burden, any clinical emergencies, or end of life. Also access to medication, social distancing causing isolation, leading to psychosocial burden, lack of bereavement support which has never been a problem in the Indian context due to the close knit family and community structure are the other problems, to name a few.
Several research studies have highlighted that patients preferred place of receiving palliative care is in their own homes when this is a safe environment for patients and care givers. Home care services, therefore, play an important role in supporting patients and family members to manage their pain, symptoms, and prepare them for the end of life issues.
This paper aims to highlight the home-based care strategy and experience of the Cipla Palliative Care and Training Center (CPC) during the COVID-19 lockdown. CPC is located in Pune, Warje, and is a 55 bedded in-patient facility offering home care services as well as outpatient support in hospitals to cancer patients requiring palliative care. It started in 1997 and has since reached out to over 17,500 patients.
Through this paper, we would like to share our experience of initiating home care for our palliative care patients during the COVID-19 lockdown. The specific aims of this paper are
The data for these articles are based on the documentation of the process of designing the protocol; the data entered by the team on unique data management software that is used at the palliative care center to record all palliative care interventions; and documenting the reflections of the team on their experience of visiting homes during this period.
The roadmap: Defining the home care protocols
Initially when the lockdown was announced in Pune on March 21, home care services were suspended as we felt it was necessary to avoid community exposure, to both our staff, as well as the patients that we would be visiting, since cancer patients fall into the category of vulnerable patients. Considering the lockdown to be a short-term occurrence, we devised ways to keep in touch with our patients through telephonic and video consultations, and liaised with local general practitioners for any urgent clinical needs or end of life management.
However, as it became clearer that the lockdown would get extended further, and through our telephonic and video consultations, we realized that patients and caregivers were getting increasingly distressed, with lack of social support, isolation, growing symptom burden, exhaustion of medication, and anxieties regarding both their primary disease and COVID-19.
The team at CPC, including clinical staff (doctors, nurses, and social workers), the administrative team, and the research team brainstormed regarding the need for home visits, anticipate the challenges for the same, and how they could be overcome. This process culminated in defining the protocols and homecare services resuming on April 14, 2020.
The key aspects of the home care protocol developed included:
The key features of the homecare protocol that were developed are highlighted in [Table 1].
In addition, special permissions needed to be applied/obtained from competent authorities for all members of the homecare team to move in the city for rendering homecare services. It was decided to have 2 homecare teams comprising of a doctor and nurse in each time.
The algorithm for visits was developed into a flow chart as depicted in [Diagram 1] below.
As illustrated in this diagram, above factors such as family involvement, local general practitioner relationship, transport availability to reach CPC were also taken into consideration while deciding about the critical cases requiring a visit.
Translating the protocols into action Presentation of data
In the period under review from March 24, 2020 to May 15, 2020, all our home care patients registered (n = 280 patients) were contacted over the phone and a total of 699 calls were made to them. This ranged from a minimum of one call to the family in the month to a maximum of six calls to a family in the month. Families requiring extended support, diet consultation, physiotherapy advice received additional calls. The month-wise distribution of calls is outlined in [Figure 1].
In the month of March, all the patients were contacted over the phone, over is soon became increasing important with our home care protocols in place that a video call would be more effective wherever possible. Hence, in the month of April out of the 395 calls, 78 of them (20%) were done as a video call and between May 1 and May 16, 70 were video calls (33%) out of the total of 214 calls. This illustrates the increasing trend in adapting for a video call by patients though this also depends on the availability of smart phones and internet connectivity [Figure 2].
From the month of April, the team also triaged the patients as per symptom burden, distress calls received, end of life patients, and resumed home care services. Basis the algorithm devised, patients were assigned one of three categories, namely high, medium, or low. The algorithm developed as illustrated in Diagram 1 was used to identify patients who were classified as “Critical.” Patients in the medium category included those whose visits could be planned at a later date and those classified as “Low risk” were patients who could be managed over video calls.
Based on this triaging system, out of the 280 patients on home care, there were 31 patients classified as critical, 145 patients who were at medium risk ad 104 patients who were classified as low risk as illustrated in [Figure 3].
All these 31 patients who were classified as critical were visited during the period between April 14 and May 16, and in addition, a few patients (n = 15) patients who had been classified as medium were also visited as they required medications/morphine and caregivers were unable to reach the center to collect these. A total of 46 visits were thus made.
The distribution of visits across Pune city based on the municipal corporation classification of “red,” “orange” and “green” zones is depicted in [Figure 4] below, red being the zone with maximum number of COVID patients, and having the maximum restrictions.
As illustrated below, the CPC team conducted 12 visits in the red zone, 9 in the orange, and 8 in the green zone. In addition, 17 visits were done outside of the limits of the Pune Municipal Corporation, i.e., Pimpri-Chinchwad area which was also in the red zone.
Of the 46 patients visited during this period, the support offered included: addressing physical symptoms, providing psychosocial support, end of life care, in case of morphine drop offs, or needing any procedures or wound dressing. The type of services provided is illustrated in the chart below. Although the services provided may not have been exclusive, and few patients may have used more than one service, we have tried to highlight the major ones we identified.
The concept of continuity of care is ever so important during the current COVID crisis, where isolation, lack of access to medical care, anxieties, and apprehensions are rampant. The American Academy of Family Physicians defines continuity of care as “the process by which the patient and his/her physician-led care team are cooperatively involved in ongoing health care management toward the shared goal of high-quality, cost-effective medical care.” Continued care ensures constant connect of the patient with the healthcare system, thus reducing patient anxieties, improving patient satisfaction, improving quality of life, and as some reports mention, even reducing mortality. With Pune being one of the districts worst hit by the pandemic, there were severe travel restrictions, limiting access to home care for several of our patients [Figure 4]. We tried to ensure continuity of care through phone calls and video calls [Figure 1] and [Figure 2].
Restarting home visits was a policy decision that we made, based on the criticality of patients assessed through phone calls and video calls made, as per our algorithm [Diagram 1] and the number of stressed calls we received. However, keeping in mind, the travel restrictions, reduced number of staff, and the need for judicious use of protective equipment, we triaged the patients into high, medium, and low criticality [Figure 3].
Aggravated physical symptoms such as pain, vomiting, bleeding, and delirium were one of the major indication for our visits. Palliative care is ongoing and responsive care., Symptoms dynamically change due to changes in the disease status, adverse effects of curative treatment, debilitated condition, and comorbidities. Out of the total, 24% visits were for managing physical symptoms [Figure 5].
Cancer patients and their families are extremely vulnerable due to the physical symptoms of the disease, the morbidity of treatment, financial setback due to the cost of treatment, uncertainty regarding the future, and threat to identity of the patient. The entire family loses all sense of normalcy in daily life. To add to it, the pandemic situation has led to further isolation, limited resources, and added uncertainty. The psychological burden patients and their families have are evident by the fact that 66.6% (n = 466 out of 699) calls and 15% visits [Figure 5] were for counselling/psychosocial support. These seven patients required a visit as the issues faced could not be addressed through calls.
The calls made by our team also helped us to identify other issues the families may be facing such as nonavailability/poor accessibility of ration, difficulty in accessing medication, and difficulty in reaching local physicians. This prompted us to help with dry rationing, thus improving quality of life of patients and caregivers by all means possible.
Although medical stores and hospitals were not shut down, after speaking with the patients, we realized that accessibility of medical stores was a problem due to transport restrictions. Opioids are not available everywhere. Also getting a fresh prescription for opioids was a major problem, due to which several patients were defaulting morphine doses. Thus, we started with dropping off morphine to patients who needed it most, these visits comprising 19% of the total [Figure 5].
End of life is a difficult situation to handle even in normal conditions. With the current COVID crisis, every step at the end of life is a challenge. The family will have to manage the end of life symptoms on their own, which is quite distressing. The local physician may not be easily available/accessible. Emergency shifting to the hospital may be difficult due to all the restrictions. One of our patients' families faced isolation from the community as death had occurred during the time of COVID and the community suspected the cause of death to be COVID. Bereavement has to be done in isolation, and the close-knit society, which is the hallmark of Indian culture, that makes loss bearable, is no longer available, due to the COVID crisis. About 33% of our visits were for end of life care [Figure 5], where our team went out into the community and empowered the family for the outcome, apart from managing the symptoms. They were counseled in detail regarding what to expect and what to do in the given circumstances. We liaised with the local physicians and ensured that the family will have all the support needed whenever possible. A total of 40 bereavement calls were also made by the team in this period which included patients who expired during the lockdown and those who had expired before the lockdown in the month of March.
The current situation, though challenging presented us with an opportunity to work beyond our current scope while reaching out to our patient pool. Optimum resource allocation, utilization, and planning form the pillars that ensured coverage in these testing times. We realized that during lockdown, the need for support is higher; hence services should not be discontinued. With abundant precautions and protocols in place, home care through visits is possible. All team members including drivers need to be taken into confidence. With the lockdown and restrictions now entering their fourth phase, we need to be ready now more than ever to adapt to changing times and evolving definitions of the “New Normal.”
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Conflicts of interest
There are no conflicts of interest.
[Figure 1], [Figure 2], [Figure 3], [Figure 4], [Figure 5]