'In my own bed': Managing dying patients at home
A blog post written by Dr Christine Sanderson, Staff Specialist, Neringah Community Palliative Care Service, NSW
'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.
Yet for so many reasons it is not always easy to achieve – and particularly the goal of a home death. In this blog post I will reflect on my recent experience in community palliative care in Northern Sydney, and how general practitioners and palliative care services together can help make this happen for patients, and to happen well.
First of all, why is this hard? I can list a few factors that mitigate against patients being cared for well and comprehensively at home. Firstly, complexity of treatment plans and multiplicity of treating teams means that many patients are 'working full-time' as patients. Decision-making responsibility and prognostic leadership are diffused between multiple teams: the oncologists (medical and radiation), surgeons, palliative care, and doctors managing other chronic conditions. These may be spread across multiple public and private sites of care, with variable access to information about what is planned and why. New targeted treatments in oncology add to the challenges for all of us. Patients may also be on clinical trials of new treatments, which add more complexity into the mix. So, who is in charge? Who does the patient, or the GP, talk to? Who has the big picture?
Secondly, the more time the patient spends in and around hospitals, the greater the risk of being admitted and never coming home again. And the pull of the hospital is enormous – they are where patients are sent to resolve uncertainty when no-one is sure what is going on, to fix things when the wheels are falling off, for the treating teams to check in, review and restage, and of course as the place to go in a crisis. Keeping patients out of hospital is like trying to fight against the vortex!
Thirdly, GPs often lose contact with their patients during the treatment phase; when they are handed back close to the end of life, GPs may have difficulty providing home-based care. With the shifting demographics of general practice, part-time doctors and ‘no home visiting’ policies are increasingly the norm where I work. Offering an after-hours locum service can rarely meet the complex individual needs of a palliative care patient dying at home, and will often end up in a hospital admission. If, when a patient dies at home, the doctor who is on duty has not seen the patient within the required time period, they may not be able to provide a death certificate, resulting in the deceased person being taken to the morgue and the family being put through the trauma of the Coroner’s procedures, including involvement of the police. I have recently heard of a situation where, when the police attended a palliative care death at which the GP had not provided a death certificate, they treated the situation as a crime scene – excluding family from the room, and taking photographs and forensic specimens, and requesting statements in case the matter was going to end up in court. The process that took over seven hours for a family whose mother had just died.
So let’s think about what is needed for a dying palliative care patient to be able to be at home safely, comfortably, and appropriately:
- The patient needs to understand their prognosis and also be aware that they have some choices about how to use their remaining time: about whether the burdens of treatment outweigh the benefits, and whether being at home is more important now than receiving treatment that will use up a lot of their remaining time and energy. This means they and their family can be prepared, and less likely to default to hospital in a crisis.
- 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. As they deteriorate, care needs to be organised around their home, not around clinics. Services, and clinicians, need to visit the home. Investigations need to be kept to the minimum that actually make a difference to care.
- 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; and lots and lots of support for the family who are doing the caring. 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. They also need to know who they can call for help at any time of the night or day.
- There are limits to the services that can be provided, and families will have to carry the rest of the load. Whilst there are services (for instance the PEACH last days of life home support program in NSW; similar things may be available in other states), public and private home nursing services, and some families do have the resources to pay for additional care, it is not really enough. Family care is essential if a person is going to be able to stay at home, and die at home.
Looking at this, we can see why the default option of admission happens so often.
However, when care at home happens well, when a family have all their ducks lined up and they very much want to care for their relative, and they know that this is their final gift to that person, then it is a job that palliative care services and general practitioners need to do together. Palliative care provides the specialist input, the equipment, helps with prognostication and advance care planning, and advises on symptom management. They help to put together the package of other services. GPs are needed to help continue prescribing and following up on symptom issues, to provide support and reassurance to the family, to contribute their longer knowledge of the patient to the plan, and to certify a death at home.
This is a division of labour that can vary in different situations, but the collaboration at the heart of the relationship is what makes a real difference to patients. The GP role in the care of patients dying at home is so important that our palliative care service does not even try to support patients to die at home unless they have a GP who will home visit. Sadly, this means quite a few of our patients will not be able to have their wish.
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Dr Christine Sanderson is a Staff Specialist at Neringah Community Palliative Care Service in NSW and a Research Fellow at CareSearch, Flinders University.