The study uncovers challenges in the cooperation between healthcare personnel, undertakers and the bereaved after expected deaths in the home (17). This includes the doctor's responsibility for the verification and death certificate, the homecare service's care for the bereaved and the deceased person, and the undertakers' work with the deceased and fulfilment of the needs of the bereaved family. If this interaction is not coordinated and planned, unfortunate ad hoc solutions may result. The study uncovered three main issues: concurrency conflicts, sequence dependency and challenges in providing personal care for the deceased. We have not identified any other Norwegian or international studies that investigate the collaboration between undertakers, homecare service and doctors in cases of expected deaths that have occurred in the home.
Concurrency conflicts are a result of the fact that healthcare personnel have no on-call preparedness or extra time available beyond their stipulated programme when someone dies at home. The study indicates some challenges that are inherent in a streamlined and task-specific health service. The bereaved and the doctor on duty may have very different perceptions of time, whereby the doctor's natural prioritisation of living patients means that tasks related to the deceased must wait.
Even though our informants reported that some GPs will do house calls for their own patients outside working hours, it is unreasonable and there is no contractual basis for expecting this kind of general preparedness from the GPs. The current GP system appears to provide insufficient parameters for GPs to quickly undertake the verification and complete the death certificate. However, the sequence dependency indicates that the doctor's tasks are crucial, because they pave the way for the further process. The responsibility for ensuring that a doctor undertakes verification at the place of death outside the GP`s working hours within a reasonable time frame is therefore often placed on the A&E clinic. The study indicates that delays in verification and completion of the death certificate can have negative consequences for the bereaved as well as for the other parties involved.
We found that tasks such as caring for the bereaved and personal care of the deceased are often delegated to the undertakers. This is not in compliance with the World Health Organization's understanding of palliation, which underscores that healthcare personnel are responsible for helping family members and the bereaved in their grieving process (10). The study indicates that the palliative follow-up is discontinued too early. Delegating the care of a deceased person to the undertaker violates fundamental nursing responsibilities (18, 19). Homecare nursing has normally been established before an expected death in the home, and we question whether municipal homecare services can disclaim responsibility for personal care for deceased persons. The deceased may change, and emit odours. The bereaved may perceive such changes as difficult and frightening. Care and preparation should therefore take place as soon as possible after the time of death.
According to prevailing legal regulations, a death must be declared at the place where it occurred (11, 12). The study shows that unfortunate and undignified practices may arise if the doctor fails to come to the home to undertake the verification and complete the death certificate. Examples include calling the police and transporting the deceased to an A&E clinic to have the death certificate issued there. A situation that calls for calm and dignity may therefore be perceived as traumatic and undignified by the bereaved. A wake with the deceased in the coffin cannot be held if the deceased must be removed to have the death certificate issued. Appropriate care and respect for the deceased and bereaved mean that transport to the A&E clinic should be avoided. The police should only be involved if there is a question of death by unnatural causes or if the person has died alone (3, 11). The homecare nurses wanted to have more time to cater to the needs of the bereaved and the deceased person, and would prefer to conclude the contact by participating in the funerals of patients they had cared for over a long period. This is a matter of resource availability, but also of care for employees and bereaved relatives (20).
The quality of the Causes of Death Registry relies on the doctor who completes the death certificate having sufficient information on health issues of the deceased and knowledge of how to state the cause of death (21). The registry data provide an important basis for health monitoring and preparedness. Its degree of coverage is nearly universal, but studies indicate that non-specific codes for causes of death are too frequently used (22). Widespread use of A&E doctors to complete the death certificate with no access to necessary information in the patient records may conceivably contribute to this. A future solution for medical records that ensures access to relevant information about the deceased to the doctor who completes the death certificate will be likely to improve the quality of data in the Causes of Death Registry.
The study indicates that in order to ensure a dignified closure in the home, better collaboration and a clearer division of responsibilities between GPs, A&E doctors, homecare nurses and undertakers is called for. Guidelines and procedures should be designed to ensure that the deceased and the bereaved can be equally well cared for irrespective of whether the death occurs in a hospital, nursing home or at home (18).
The findings may also indicate that there is a need for procedures to ensure that homecare nurses and GPs take responsibility for advance care planning with the patient and his/her next of kin (6, 23). The planning should be specific and include information about the time immediately post mortem. Written information can be useful, but cannot replace advance care planning. Established collaboration during the palliative phase and joint home visits by the GP and the homecare nurse responsible can provide a good setting for advance care planning.
The municipalities should provide and organise necessary assistance by healthcare personnel when expected deaths occur in the patient's home. In light of the requirement for adequacy, the municipality must be expected to organise the service in such a way that a doctor can verify the death at the place where it occurred. The municipality should ensure access to necessary nursing and medical resources, including outside-the doctor's contractual working hours. Systems that ensure predictable forms of collaboration between homecare nurses, GPs, A&E clinics and undertakers can provide better care for the bereaved, dignified care for the deceased and better working conditions for the personnel involved.
A new national manual for out-of-hours services and emergency medical communication centres was published on 28 February 2020 (24). The manual also describes the doctors' responsibility for verification of deaths and completion of death certificates in cases of expected deaths in the home. No reference is made to care for the bereaved, nor to preservation of the deceased person's dignity. We understand that long distances in some municipalities can represent a challenge, but we question that the manual permits use of audiovisual aids to replace home visits to verify a death, and allows transport of the deceased to a morgue before the death certificate is completed. In our opinion, the manual is at odds with the ideal of a dignified home death.
Our study has some strengths and limitations. The participating informants may have been especially concerned with the topic of the study and thereby not representative of their colleagues. Focus groups with colleagues from the same profession can focus on different information when compared to focus groups that include different professions. A study based on focus groups with several interacting professions might elucidate this topic in a different way. We believe that the groups of health professions included in this study play a key role in the interaction with the undertakers. Other professions, for example clergy, may play an important role. The findings in this study cannot be generalised to other municipalities. To elucidate practices in other regions we collected supplementary information from firms of undertakers and A&E clinics. This information indicated that practices differed, but the most common procedure in most municipalities was that the A&E doctor or the GP came to the place of death to verify the death and complete the death certificate.
The strength of the study is its elucidation of the experiences of collaboration among healthcare personnel and undertakers at a stage that has previously not been focused. In this description we have pointed out some prerequisites that should be met to ensure that the various actors involved immediately after a death can complete their activities appropriately.