In recent years, there’s been a lot of discussion about palliative care. Now, more than ever, policymakers are asking questions about death. One of the most important centres around whether dying at home is a right.
For the public and private agencies responsible for delivering care at home, the focus is different. Whether you’re a decision maker at a regional health authority, or a care coordinator or home care nurse, patients are at the forefront of your thinking.
You truly want to help the Ontarians affected by your decisions or the care you provide. As much as possible, you want to know and understand them as individuals.
Who wants to receive palliative care at home, and why is this choice so important to them? What do these patients need to be as happy and comfortable as possible? Near the end of life, health care professionals want to provide as much support as humanly possible.
One thing is clear. Dying at home shouldn’t be more stressful for patients and their family members than dying in a hospital. No matter your role in the home care sector, remembering a few basic principles can help you make things easier.
Ensure patients make informed decisions
Study after study concludes what many health care experts already know: most patients prefer to die in their homes.
That said, when it comes to dying at home, there are many practical considerations. Circumstances change, and so do the wishes of care recipients. Ensuring that patients know their options at various stages of illness is important.
At the beginning, logistics are important. Patients are often more clear minded than they’ll be later on, when day-to-day life may present more challenges. At this point, coordinators often engage in an open dialogue about dying at home – on the patient’s terms. Is it feasible?
Regional accessibility is one major consideration. Sadly, geography often plays a role in the quality of end-of-life care Ontarians receive. Through initiatives like Health Links, the province is working to reduce inequality.
t’s important for patients to know what kind of support they can expert to receive based on where they live.
Later on, pain and other symptoms may be more difficult to manage. Preferences may change. And patients may start to feel that their loved ones are devoting too much energy to providing physical care.
In such cases, it may be preferable to receive care in a more controlled environment. As just one example, in hospices, residents and their family members often have more energy to devote to spending quality time together. Alternatively, they may find ways to coordinate care so that they can have this time together at home.
Provide continuous access to professional care
Consider this statistic from a recent report, which looks at provincial data from an eleven-month period. Almost two-thirds (64.9%) of Ontario palliative care patients died in hospitals.
Given patient preferences for dying at home, why should this be? In many cases, the physical comfort of patients is simply better in hospitals and facilities. These are places where patients have around-the-clock access to professional care.
But what if this support was available in patient homes? Shifts in health care attitudes, along with communication and information technologies, have made it possible.
Caregiver consistency is one issue that can be greatly improved with technology.
Whenever possible, patients want to see nurses and personal support workers (PSWs) they already know. Because palliative patients are often at their most vulnerable, trust is particularly important.
Videoconferencing enables patients to connect with their personal home care workers and health practitioners. It allows them to receive emotional support even when the right caregivers can’t be there in person. In many cases, these caregivers will include mental health professionals, social workers, or providers of spiritual guidance.
Video check-in sessions can also improve the physical care a person receives. In hospitals and palliative care wards, specialists are often nearby. But in the home, expert knowledge on issues such as pain management is still best provided by specialists.
Through video coaching, a generalist nurse can perform an important at-home procedure – all under the watchful eye of a specialist.
For all practitioners providing palliative care, sharing care plans is critical. Technology that makes it possible to access and revise a patient’s information in real time will lead to better care – and the highest levels of comfort achievable.
Help family members stay connected
Near the end of life, family can be incredibly important. For many palliative patients, dying at home is about being close to those who matter most. To connect with loved ones in a place full of happy memories can mean so much.
Unfortunately, this experience can also come with a lot of stress for family members. It’s hard enough to say goodbye to someone you love. Dealing with caregiver burnout or worrying about the services your family member is receiving can take a serious toll.
There are ways that home care provider organizations can help. Keeping not only families informed about care options and health status changes is often key.
Meetings between professional care teams, palliative patients, and family members can be very beneficial. That said, these discussions aren’t always seen as a major priority by practitioners. Often, difficult or uncomfortable conversations are left until the point of crisis.
There’s no reason why this should be the case. Effective communication ensures everyone is able to prepare for the future and work toward the same goals.
Productive communication occurs when nurses, doctors, and social workers are open and honest with patients – and their families. It occurs when everyone within a circle of care has access to a patient’s care plan and health information.
For patients who live at home, there’s no shortage of communication challenges. But with high-quality videoconferencing and real-time care plan sharing, these challenges can be overcome.
Family members can’t support their loved one fully when they don’t have the information they need.
Never stop listening
All too often, understanding the wishes of palliative patients who live at home falls to family caregivers. While loved ones often play an important role in maintaining patient quality of life, they can’t do everything alone.
Home care professionals need to be sensitive to the preferences of at-home patients as time goes on. Health conditions and symptoms progress, and so should support from professionals. It’s important to talk to patients on an ongoing basis about the kind of help they need.
In many cases, those dealing with serious illness struggle with aspects of their personal lives. The people they love can’t always bring resolution – especially as they may be involved in the personal conflict.
But often, a mental health professional can provide relief. It’s not just because they have the training (though of course that’s part of it). It’s because they offer a new, outside perspective.
Working through difficult mental, emotional, and spiritual issues is often just as important as managing physical pain. The best service providers know this.
Compassionate care coordinators can help patients live out the last stages of their lives on their own terms. By talking with patients on an ongoing basis, they provide truly person-centred palliative care. Coordinators are a lifeline.
Luckily, initiatives like Health Links are largely based on the knowledge that coordination and communication are extremely valuable – and closely linked.
The professionals who provide these services should be in regular contact with the people they help. How else can they help patients embark on the final stages of life?
Comprehensive Care for Patients Dying at Home
Palliative care decisions are incredibly difficult to make. But for many Ontarians, dying at home is the only acceptable option. Unfortunately, making this choice doesn’t necessarily mean everything will go smoothly.
Receiving care at home often comes with a set of challenges – and they aren’t always easy to navigate. But home care leaders and frontline workers can make palliative care better for patients. It all starts with a few guiding principles.
Feature image courtesy of A.Davey