Family caregivers are one of our most important resources. Providing approximately 80% of the country’s home care, these unpaid workers are an integral part of Canada’s health care system.
Now, health care leaders are beginning to realize their value. More than ever before, governments are making support for caregivers a priority. Ontario just announced $20 million in funding for respite care earlier this year.
But is this enough? Given how much these individuals mean to patients and the health care system, should leaders be doing more to ensure their wellbeing?
Caregiver burnout can have devastating consequences. Psychological distress, health problems, financial hardship – caregivers can be negatively affected by their lifestyles in so many ways.
If you’re in a health care management or leadership position, you’re almost certainly passionate about helping people. You want to improve quality of life not only for patients, but for their families, too.
Your also well aware of the cost to the system when caregivers don’t receive appropriate support. Past estimates have put the annual market value of unpaid care at $25 billion. What happens when caregivers who burn out are no longer able to perform this work?
Respite care is just one part of the solution. To truly improve life for patients and their caregivers, health care leaders need to create fundamental change in the care coordination and delivery processes.
The right solution will be equal parts innovation and compassion. Here are a few areas that health care decision-makers will need to focus on moving forward.
Shift the Responsibility for Care Coordination
If you’re not a family caregiver, pretend, for a moment, that you are.
Let’s say your father has cancer and suffers from limited mobility. Personal support workers (PSWs) sometimes visit his home. But due to high demand for services, you can’t always get help for him when he needs it most.
Because of the painkillers he takes, your father is often mentally foggy. You worry that he’ll forget to take his other medications, and you frequently stay at his house to ensure that he does.
You also take time off of work to drive your father to appointments with specialists. More than once, you’ve reminded his physicians of health details they’ve overlooked.
On several occasions,the oncologist has missed an important piece of information that should have been sent to her – such as a set of test results.
Family caregivers often know their relative’s health details inside out. As a result, they frequently wind up taking on the role of care coordinator – a high-stress position when the patient is someone you love.
Needless to say, ongoing anxiety can accelerate caregiver burnout. And burnout can lead to a whole host of problem for patients, caregivers, and the health care system.
If you’re a decision-maker involved in health care delivery, fostering the right attitude within your organization is key. But it’s not enough to talk about collaboration and keeping one another informed. You need to put a clear coordination system in place.
Focusing on accountability for outcomes related to poor communication can help. And when it comes to infrastructure, digital technology – and in particular, technology that connects care teams through mobile devices – is essential.
When coordination is seamless, caregivers have more time for to care for themselves.
The right app will result not only in better coordination and care-plan management, but more empowered patients and family caregivers. Look at tools that make it easy for a patient’s circle of care to update her care plan.
For caregivers, on-demand access to their loved one’s health and treatment information means greater peace of mind.
Focus on the Patient’s Journey
It’s understandable. Care can’t always be patient-centred. For one thing, any given medical practitioner or professional caregiver probably belongs to many different care teams.
Consider the nurse who has to make many separate home visits in a day. No doubt he cares about his clients. But the way that work is set up encourages him to think of it as a series of tasks to be completed.
Family Caregivers are different. The care they provide is focused on their ill loved ones – often to the point that their other family relationships suffer. A caregiver may also risk her own personal health, her career, and her financial stability.
Feelings of frustration toward other circle of care members may surface.
Perhaps next steps aren’t outlined clearly enough, or a small miscommunication occurs between a doctor and a specialist. To a devoted caregiver, it may seem as though those involved are careless – when they’re generally anything but.
Poor coordination and caregiver distrust of the health care system don’t make for a recipe for teamwork. And when a circle of care doesn’t work as a team, family caregivers wind up filling in the cracks.
Luckily, there are things coordinators and frontline workers can do to lighten a caregiver’s heavy load. Focusing on their loved one’s journey through the health care system is a big part of the solution.
Health care management and policymakers should encourage practitioners to put patients at the centre of their care. Care teams should clarify next steps, how they’ll likely affect the patient, and who will carry them out.
There are many cost-effective and relatively-straightforward steps that can be taken toward focusing more on patients than tasks. Strengthening care teams is an important step.
Providing tools that encourage patient engagement is key. Let’s say you’re a home care client. If contacting your doctors, nurses, and professional caregivers were as easy as tapping a tablet screen, wouldn’t you be more likely to engage in self care?
This type of patient involvement feels like a gift to many family caregivers. Often, videoconferencing sessions between patients and care team members can also take some of the pressure off of family caregivers.
Keep Family Caregivers Up-to-Date
Imagine this. You’re mother has kidney disease, heart failure, and diabetes. She requires a lot of care at home.
New nurses and personal support workers (PSWs) often come to the house. One day, you find that a nurse is administering a new dosage of one of your mother’s medications.
You know that the balance of drugs she takes is extremely important. You’ve spoken to her family doctor and her pharmacist about interactions and potential side effects. The new nurse tells you the dosage has changed, but she’s vague about the details.
Having to bring new care team members up to speed on a loved one’s condition can be both exhausting and anxiety-provoking. Is the new nurse working with outdated information?
It makes sense that family caregivers would worry. If one member of a loved one’s care team is working with slightly outdated information, the results could be disastrous.
And a caregiver who doesn’t have the latest medical or treatment information may feel helpless.
What if he’s helping the person he loves adhere to the wrong lifestyle recommendations? What if he misses or mixes up an appointment because he received the scheduling information too late? Is it possible that he’s passed the wrong results on to a nurse?
Some family caregivers torture themselves with questions like these.
Decision-makers who influence the behaviour of frontline workers should prioritize ongoing communication within circles of care. The easiest way to achieve this goal is by introducing centralized care plans that can be updated from anywhere.
Being able to view changes in real time is also critical to ensuring everyone stays informed. And two and three-way conferences can clear up confusion in an instance.
Digital tools, telemedicine technology, and mobile apps all hold tremendous promise when it comes to connecting circles of care and keeping caregivers in the loop.
Laying the Groundwork for Comprehensive Support
As of 2012, twenty-eight percent of Canadians acted as caregivers for family or friends. Given current demographic trends, that number has very likely risen – and will continue to do so.
Without these individuals, the health care system would be in serious trouble. And unfortunately, burnout is a threat to many of these caregivers. For health care leaders, finding ways to alleviate caregiver stress just makes sense.
Luckily, with the right attitude and the right carefully-selected technologies, leaders in health care delivery can really make a difference. Get ready to improve care coordination, learn about better access to real-time health information,and adopt a patient-centred state of mind.
Feature image courtesy of a4gpa