A desire to die at home can only be achieved if all of our ducks are lined up and everything goes according to plan. Dr Christine Sanderson, Staff Specialist, Neringah Community Palliative Care Service, NSW shares her experiences with how this can happen in this story: ’In my own bed’: Managing dying patients at home. (CARESEARCH, 24 Nov. 2015)
‘Staying at home’ is a bit of a mantra for palliative care. When time is precious, home and family beckon as a place of safety and comfort, where a person can completely be themselves. The challenge is how to get general practitioners and palliative care services working in harmony to bring it off and allow the dying to achieve their final wishes.
This is not the kind of thing that can be done on the spur of the moment. Just as an Advance Health Care Plan and an Advance Death Care Plan need careful consideration, so to does juggling the various requirements to get a good death at home. According to Dr Sanderson there are a six factors needing our attention that will mean families are well prepared “and less likely to default to hospital in a crisis.” The ultimate objective is “to be at home safely, comfortably, and appropriately.” Extracts from the six points follow:
- The patient needs to understand their prognosis and also be aware that they have some choices about how to use their remaining time.
- They need support to navigate the system and make each decision as it arises.
- They need support at home. Many patients understand that they will die but aren’t really fully aware of the dying process; that for at least some of that time they will need care, a lot of care and won’t be able to answer the door or the phone, get to an appointment, or be on their own at home.
- They need a realistic plan for crises and a viable Plan B for what to do if they can no longer be safe or comfortable at home.
- They need proactive symptom management. This includes crisis medications that can be given parenterally – to be available well ahead of time, as deterioration can happen very fast; aids and equipment for safety and comfort. Basically, the family are providing the alternative to hospital, and this is a completely new experience in most cases. Their need for knowledge, new skills, and reassurance is enormous.
- There are limits to the services that can be provided, and families will have to carry the rest of the load.. Family care is essential if a person is going to be able to stay at home, and die at home