Comfort Care Kit: Use of Nonoral and Nonparenteral Rescue Medications at Home for Terminally Ill Patients with Swallowing Difficulty

Introduction

Amajority of patients who suffer from a terminal illness want to die at home. ¹ Good symptom control and support to the caregivers are needed for home death to be possible. This could pose a challenge to the home hospice team as symptoms near the end of life are common as death approaches. ² Moreover, in the last days of life, patients often lose their ability to swallow and the medications that they used to take orally become difficult to administer. This may precipitate a crisis at home and may prompt caregivers to inadvertently bring the dying patient back to the hospital. ³

To address this concern, our palliative care team devised a comfort care kit (CCK) that consists of medications specifically for nonoral and nonparenteral use. This kit is provided to family caregivers with instructions to administer the medications for various symptoms such as pain, dyspnea, nausea/vomiting, fever, delirium, and death rattle. The aim of this study was to evaluate the feasibility of the CCK from the perspective of bereaved caregivers.

Methodology

The pilot study was conducted at HCA Hospice Care in Singapore. Discussions were held to ascertain the contents of the CCK. Common symptoms at the end of life were identified ⁴ and possible combinations of drugs within the pack were evaluated based on available literature of drugs that can be given effectively through routes other than oral and parenteral.^5–7 Local practice, availability of drugs, costs, ease of administration, and safety were also considered. Five drugs were eventually chosen for inclusion in the CCK:

1. Morphine sulfate (10 mg/mL) injection ampoule—0.5 mL given rectally for pain or shortness of breath;

Every CCK provides 1–2 doses of each medication in a bag. Contents of the kit were replaced during the next home visit if medications were used. Urgent home visits were made when caregivers ran out of CCK medications and another dose needed to be administered or when symptoms were not relieved after medication administration. The kit also included an instruction sheet for the caregivers regarding the use of the medications and the symptoms for which they should be used. Caregivers were further educated on how to use the kit by our palliative care team.

A CCK was provided to a caregiver when a patient was entered into the care for the dying pathway based on the following criteria: (1) recognized by the palliative care team as entering the dying phase based on clinical signs, (2) lost his/her ability to swallow, and (3) had low symptom burden in the home setting. Patients with poorly controlled symptoms, on higher doses of opioids (oral morphine equivalent daily dose of more than 60 mg), or on continuous infusion of subcutaneous drugs were excluded. Caregivers who were not comfortable using the CCK were also not given the kit.

As part of our quality assurance program, a telephone survey was conducted by the nurse-in-charge to the caregiver approximately 2 weeks after the death of the patient. This timeframe was chosen because we did not wish to call bereaved family members during the first week when they were often busy with funeral planning. The following questions were asked to assess the use and effectiveness of the CCK:

1. Was the CCK used? Yes/No

Because this is a retrospective study of the data collected during our quality improvement initiative, our institutional policy did not require us to seek Institutional Review Board approval.

We analyzed the data using summary statistics including averages, proportions, percentages, and ranges.

Results

Between February and August 2012, a convenient sample of 49 caregivers completed the phone survey. Most of those interviewed were children of the deceased patients. Patient and caregiver characteristics are shown in Table 1.

Of the 49 CCKs issued, 33 (67%) used the kits (Table 2). A majority (76%) only used one medication from the kit. Atropine drops were the most commonly used, followed by morphine and paracetamol. Lorazepam and haloperidol were the least commonly used medications.

All family members who have used at least one drug in the CCK did not find any difficulty in using the kit. Those who did not use the CCK also found it helpful knowing that a standby kit was available if and when distressing symptom developed.

All respondents except one found the medications helpful in alleviating the patient's symptoms. One family member rushed a patient to the hospital emergency department due to uncontrolled dyspnea despite rectal morphine administration. This patient passed away in the hospital, whereas the rest of the patients died at home.

Discussion

In this pilot survey, we found that CCK was used by a majority of individuals given the kits. The caregivers reported it to be easy to use and useful for symptom control. Only one drug was used most of the time and atropine was the most commonly used. Almost all patients who used the kits were able to die at home. Our findings suggest that the CCK may be a useful tool to enhance the care of patients dying at home.

There is a paucity of literature on the use of medication kits at home for symptom control although the practice of providing emergency boxes at home is common. ⁸ Bishop et al. ⁹ conducted a survey of 22 hospices and reported considerable variation in medication kit contents and practice. Walker et al. ¹⁰ examined the perception of hospice managers and clinician regarding the value of medication kit use. More recently, Leigh et al. ¹¹ surveyed hospice nurses from 16 agencies regarding medication kit use. Our study is the first to examine the perception of bereaved caregivers, which provides a unique perspective of the utility of home medication kits.

Our CCK is unique because it is specifically designed for terminally ill patients who are unable to swallow and it can be administered by caregivers at home. Therefore, it contains medications that can be given by routes other than the oral route, i.e., sublingually and rectally. We have purposely avoided the parenteral route as some caregivers are not comfortable administering injections at home. ¹² Our CCK differs from medication kits in other home care and hospice programs that were either intended for patients who were still able to swallow, or meant for health care staff to administer upon their arrival in the patient's home. ⁹

During the design of the kit, we considered the patient and caregiver needs, safety, costs, and local availability of drugs. The CCK was provided at no cost to family members. Thus, we used the least expensive combination of drugs without compromising the effectiveness of symptom control. Each pack costs approximately 10 SGD (approximately $8 USD). Morphine suppositories would have been preferred over morphine ampoules, however, this is not available locally. The high cost also prevented us from replacing the haloperidol ampoule with haloperidol drops.

Over two-thirds of the CCKs dispensed were used. Our finding is consistent with a survey of home hospice kits in which the usage was more than half of those distributed. ⁹ Further research is needed to examine reasons why some families did not administer the CCK. One potential explanation is that some patients were relatively asymptomatic until death. Caregivers who did not use the kit still reported that they found the CCK helpful as a backup in case any symptom arose.

Palliative medication kits placed at homes of terminally ill patients have extended the period of time they were cared for at home, increased chance of home death, and lessened hospital readmissions. ¹³ Leigh et al. ¹¹ reported that 93% of nurses surveyed believe that having a medication kit at home helped avoided emergency room stay and/or hospitalization. Our finding that almost all our patients were able to stay at home until their death is encouraging, however, it is unclear how much of a role CCK contributed in the context of other interdisciplinary palliative home care interventions. Schonwetter et al. ¹⁴ reported that hospice emergency kits were associated with lower frequency of emergency room visits and/or hospitalization (odds ratio 0.33, p=0.004). Future studies are needed to examine whether our CCK could improve symptom control, reduce caregiver distress, and decrease emergency room visits and hospitalizations. The cost effectiveness of CCK and cost avoidance potential should also be further examined. ¹⁰

Our study has several limitations. First, the results presented here are from an ad hoc survey as part of our quality improvement initiative. We did not document the number of nonresponders and were not able to contact all caregivers who received the CCK. Second, we collected data from bereaved caregivers 2 weeks from time of death. Acute grief reaction may have affected their response. Third, we surveyed a small sample of patients. Finally, this survey study does not ascertain that CCK has a direct impact on clinical outcomes such as emergency room visits. Further studies should examine this further, preferably in the setting of a randomized controlled trial.

Conclusion

In summary, the CCK was perceived by bereaved caregivers to be easy to use and helpful in controlling symptoms for patients in the last days of life who were no longer able to swallow. Further research is needed to identify the optimal medications for inclusion, and to confirm the potential benefits of CCK.

Author Disclosure Statement

No competing financial interests exist.