Congestive heart failure. Chronic kidney disease. Peripheral neuropathy. Organ transplant. Stroke. Osteoarthritis. Diabetes.
These are just a few of the complex chronic diseases that patients admitted into low-tolerance, long-duration inpatient rehabilitation have to live with. Their lists of medical comorbidities generally peak at 10 different diseases and often exceed that.
With each diagnosis comes an even longer list of medications, with an even longer list of side effects.
These patients are medically fragile and highly complex. And to top it off, the vast majority are elderly. With that comes the natural experience of aging – decreased hearing and vision, delayed thinking and slower movements. While these may not be diagnoses, they contribute to the overall patient sitting in front of us.
Most of them come in with one goal: to get strong enough to go home.
To be at home safely, the patients rely heavily on home supports. Most cannot afford to fund these personally and depend on publicly funded homecare under the jurisdiction of Ontario’s Ministry of Health and Long-Term Care (MOHLTC) via Local Health Integration Networks (LHIN). Essential care at home is largely provided by personal support workers (PSW) aiding with the basic activities of daily life, such as bathing, toileting and dressing. Nurses assist with the medical aspects of care, such as changing bandages or administering medications.
But the patient who came into an acute care hospital, often many months ago, is not the same person going home.
Patients are transferred to our inpatient rehabilitation ward from acute care as another step in their care journey. They have been treated for many medical conditions and have undergone extensive testing and work-up, all while becoming deconditioned, more medically complex and more frail.
While they may have functioned well at home prior to this, returning home with this new level of function can be extremely difficult – both emotionally and physically.
To combat this anticipated hardship, we as physicians make referrals to the appropriate regional LHIN for PSW and nursing support, as well as various home-based therapies that are now virtual during the pandemic. Based on a standardized home care assessment form, LHIN care coordinators determine how much and which supports a patient is eligible for. However, the process is often inconsistent among different care coordinators.
Unfortunately, despite our best efforts and the known turbulence of returning home after months in various hospitals, our frail and vulnerable patients are falling through the cracks. In October, a CBC article shed light on a 76-year-old man from London with amyotrophic lateral sclerosis (ALS) who was left in his wheelchair for three consecutive days. Last month, another CBC article revealed that a 74-year-old man from Mississauga with advanced dementia and a prior stroke had his homecare canceled by an LHIN due to presumed COVID-19 infection.
These are just two among many devastating examples.
We are aware of our own discharged patients who either did not receive the home support they were referred for or did not receive it in a timely fashion because of what LHINs say are staffing shortages during the pandemic. This is having devastating consequences, leading to our patients decompensating within days of reaching home.
They are missing medications, becoming increasingly bed-bound and unable to access virtual therapy. The lucky ones can rely on loved ones to fill the gap. But many more are failing at home and re-entering already overburdened Ontario hospitals at alarming rates.
Some of our patients acquire COVID-19 or other hospital-acquired infections during their re-admission. Many become even more deconditioned and are unable to rehabilitate back to their previous baseline level of function, creating a whole new host of problems. Those who can tolerate therapy are transferred back to us from acute care for another inpatient rehabilitation stay to regain their strength. And in a circular fashion, we once again discharge these patients “with supports” and the never-ending cycle repeats.
On discharge from an acute care hospital or inpatient rehabilitation, the maximum publicly funded PSW support a patient is eligible for in Ontario is 14 hours per week. Those awaiting long-term care may receive additional visits per day temporarily, in the range of 21-28 hours per week. This encourages patients and families to choose more long-term care home options, relieving pressure on hospitals.
However, Ontario LHINs contract out almost all front-line care. Thus, access to LHIN services is variable across different regions. Populations that are less central have poorer access and availability of services. Those living in the Beaches, for example, are serviced by an LHIN whose per capita homecare budget is greater than that of its next-door neighbour in Scarborough.
As we discharge this enormous number of hospitalized, elderly COVID-recovered patients, including those disproportionately affected in racialized and low-income groups, the gaps in services expose stark inequities. It is imperative that home supports and outpatient rehabilitation resources be scaled up to meet this demand in all regions.
The Ford government has publicized a temporary wage boost for public sector PSWs but this is a band-aid solution to this ongoing shortage.
We are advocating for better wages, benefits and paid sick days for home-sector PSWs in agencies affiliated with LHINs; improved safety protocols and PPE provision to care for isolated COVID-19 positive patients at home, if necessary; immediate hiring of additional PSWs; and decreased cost barriers to training.
We are requesting greater hours of homecare than what LHINs currently allot for the patients that we send home.
We are demanding transparency and accountability. LHINs must assess performance and be aware when care falls short, making these reports publicly available.
We are also requesting increased access to LHIN nursing care and the provision of greater hours to aid in keeping those with complex chronic diseases healthier and at home.
Implementing increased homecare resources would require upfront costs but would be beneficial in the long term. Housing a patient in a non-ICU bed costs $1,000-$1,500 per day. Each day that patients are not in their homes, the system is financially stretched. LHINs receive only four per cent to five per cent of all provincial health spending, which is not enough. Prioritizing homecare needs to be the number one agenda item for the province in 2021. With an estimated 38,000 people on waitlists for long-term care beds, the emphasis should be on keeping these patients in their own homes safely with the supports they need.
Before the pandemic, we knew our discharged patients were falling through the cracks. It has become even more apparent now. Our patients are at home without adequate supports and isolated from their loved ones. This is leading to delayed care for both emergent and elective issues, accelerated functional and cognitive decline, depression, anxiety, falls and fractures.
The lack of adequate funding is leading to severe downstream consequences and far too many graves.