The Personal Health Navigator is available to all Canadian patients. Questions about your doctor, hospital or how to navigate the health care system can be sent to AskLisa@Sunnybrook.ca
The Question: My mother is in hospital. We feel she is not well enough to go home as she cannot get up to go to the bathroom or walk but they seem ready to discharge her. She walks with the help of a rollator and is medically stable. Our family wants her to stay in hospital because we are nervous about what happens when she goes home. What should we do?
The Answer: This question came through our Office of Patient Experience and it is one that doctors hear frequently. There are a couple of things to note right off the bat: doctors only send patients home who are medically stable and once that decision is made, the hospital often ceases to be the best place to convalesce.
“One problem is that because you are in hospital, you may wind up staying in bed more than you would in your own home,” said Dr. Steven Shumak, former head, division of general internal medicine at Sunnybrook Health Sciences Centre. “Not only does that weaken or decondition you it also sets you up for complications in your lungs as you are less likely to take deep breaths when in bed. In fact, every moment you spend in hospital increases the chance of a complication or infection.”
In hospital, patients tend to become less active and they quickly lose their muscle. That deconditioning causes them to stay in bed longer, creating this vicious cycle that can be difficult to break.
This is a significant concern for many hospitals, including this one, where the average age of patients cared for by internists like Dr. Shumak is 80 and the length of stay for them is around six or seven days.
Patients admitted to medical beds are acutely ill, coming through the Emergency Department. Common diagnoses include pneumonia, stroke, difficulty breathing, heart attack, or internal bleeding. They are some of the sickest and most complex patients doctors will treat and they are growing in numbers.
Seniors are the fastest-growing segment of the population; currently about 4.8 million Canadians are aged 65 and older. That figure is expected to more than double to 10.4 million by 2036 and by 2051, one in four will be older than aged 65.
Oftentimes, living a long life means living with several chronic medical conditions that require skilled clinicians to manage, especially when it comes to different medications.
For some patients who are older, the mere act of being admitted to hospital, with the changing faces of health providers, unfamiliar routine, bright lights, and sleep disturbances can be enough to precipitate delirium, a medically significant event characterized by sudden, severe confusion. Delirium doubles the length of a patient’s hospital stay for any given diagnosis.
“When it starts, delirium will typically begin at night, perhaps because people no longer have the visual cues they depend on,” said Dr. Shumak, an internist who has practiced medicine for more than a quarter century. “It’s very serious but beyond that, delirium can be persistent. It [can be] like a hangover you don’t get over.”
So I do share your concern what happens when a patient goes home – and seemingly is out of the hospital system – which is why I plan to write a future column on what happens after being discharged from hospital.
“No matter which way you slice it,” said Dr. Shumak, “Most patients are better off at home than they are in hospital.”
Lisa Priest is Sunnybrook’s Manager of Community Engagement & Patient Navigation. Her blog Personal Health Navigator provides advice and answers questions from patients and their families, relying heavily on medical and health experts. Her blog is reprinted on healthydebate.ca with the kind permission of Sunnybrook Health Sciences Centre. Send questions to AskLisa@sunnybrook.ca.
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Hi I have a question I have a mother in law that lost her home so she sign up for emergency housing so I and my husband allowed her to stay with us for while till she finds a place but it has be 2 years now and still nothing she has lot of problems of walking and can’t go to bathroom cause it’s upstairs the only bathroom in my house she was in so much pain my husband called 911 and sent her to hospital but few hours later she came back still in pain and next day health nurses comes few times then they left with no help just talk to her and now she doesn’t have a health nurse that should come and help her and now her shoulder is out of place and my husband and her went to hospital and few hours later they sent her back without fixing it cause she needs surgery for it to be fix see I have 5 kids at home and my husband works long hours should she go to a nursing home or what should we do ? Oh and she been sleeping on sofa cause we don’t have enough beds and my house is only 4 bedroom so she sleeps in livingroom we don’t what to do we want her to get the help she needs
My mother had open heart surgery 12 days ago. She is medically stable (so they say) however she is not moving a lot. I am having problems with Medicare who is taking its time to process paper work for her to be accepted at a nursing home for a few weeks so she can get proper monitoring, and rehab. They want to send her home. I am nervous but at the same time excited for her to be home. However I am concerned about her care. She might be a little quick on the “I am better” mode and exaggerate her doings. She is a go getter independent Brazilian lady. She is fragil but there is a fire inside of her. My heart is divided and concerned. I am not working as much with her at the hospital. Now imagine if she is under my care? What should I ask them tomorrow at the hospital? Can they send mom home if she NEEDS help and specially since she lives ALONE. Help!
My Mom is in hospital after having a hip replaced after a fall. Now that it has been 6 weeks it’s time to go home. She now is nauseous 2 days before she is discharged and won’the eat. My Dad passed away just before she broke her hip. Now she has to go home alone. Could she be nauseous because she’s afraid to go home alone.
Can a hospital force my mom back to a nursing home , if we feel unhappy about her care there and want to move her
Hi Paula;
Lisa Priest has moved on to other duties. So I am taking the liberty of answering your question.
Once a patient is stable and no longer in the acute phase of an illness, the hospital will send the patient back to the referring nursing home.
You are obviously not happy with your mother’s care at the nursing home. So that really is the best place to address your concerns. Most nursing homes have someone who deals with family concerns. Ask for that person.
The hospital may seem like a safe haven away from the nursing home. But, as Lisa Priest explained in her blog, it is not in the long-term interest of your mother’s health to stay in the hospital any longer than is medically necessary.
Paul Taylor
Hi Paul,
My neighbour who is 84 is currently in the hospital. He has suffered many strokes over the last few weeks which have now left his right side paralized, taken away his speak, sit up, he can’t walk, transfer, lift his head on his own or eat solid food and is on an IV with 75ml per hour fluid. He has end stage renal kidney failure and has dialysis three times a week. The hospital is now starting him on a pureed diet and is speaking to his wife about transferring him to a long term care facility that offers dialysis on site. His wife is not comfortable transferring him as there are only two facilities that offer dialysis on site with the closest one being in downtown Toronto. His wife is 72 years old and cannot drive. She and her husband have no children. As long as she is willing to pay for his care at the hospital, does she have the right to refuse for him to be transferred to a long term care facility.
Rich,
You asked about wait times for nursing homes.
This is my understanding: if the home you choose has a wait list, you will be asked to place a few names of homes in order by first and last choice. If a bed becomes available but is not on your preferred list, you can decline the bed offer and maintain your position on the wait list of the home of your choice.[You are allowed to put five homes on your list]. However, if you reject a bed offer from a home on your list, you will be removed from all wait lists and will be forced to wait six months to reapply for placement. So you are right about that. However, if the health of your father changes significantly in this time period, he can reapply. I hope this helps. I find this question so important, I am planning to do a column on it addressing it in more detail. Lisa
Hi Lisa,
I was going to send you an email directly, but I’m sure your readers can benefit from my posting a comment. I’m certain that many people are dealing with similar situations.
We had a family meeting to talk about dad. We know the hospital wants him out – they are no longer treating him as he is stable. Unfortunately the physiotherapists have written in their report that dad can walk and as such the social worker was looking into assisted living and not a nursing home. We informed the social worker that the physiotherapist was incorrect and that two of dad’s doctors say he NEEDS to be in a long-term care facility. The social worker said she will talk to the doctors. The physiotherapists stand right behind dad as he walks with a walker to the bathroom but most of the time, dad will use a commode. By the time he takes the 10 steps he needs to take he is truly exhausted and his heart is working very hard. He is constantly afraid he is going to fall (having done so many times in the middle of the night when he wakes up confused).
Dad keeps saying he wants to come home, but my mother is pretty well at the end of her rope. Dad has changed quite a bit – no patience and a very quick to argue. My mother is a pleasant, mild mannered person and you can imagine the stress this creates. After she visits with my dad every day, she heads home exhausted and is glad to be alone and able to rest. We’ve offered to bring her over to our house for dinner or go to hers but she really wants to just not be “Mom”. I can understand – having the kids around is fine, but the grand-kids are quite a handful.
Also, mom’s house is not setup to take dad home. Wheelchairs wouldn’t work in her narrow halls. She has steps to get in the front door and out the back to the porch has more steps than the front (we could ramp the front door but the porch is too small). They have stair lifts going to the basement and upstairs but once you are off the lift, there isn’t much room for a wheelchair and the stairlift upstairs has 1 step once you get off the lift. She could get a hoist/track system installed in her current home – but it would be costly and then mom would have no rest from dad’s demands.
Since all of the kids have grandchildren – and dad can only take small doses of them before he begins to lose it, there is no option for him to come stay with any of us.
As I mentioned earlier, dad gets confused sometimes at night. If he decides to sleep with his bed flat he doesn’t breath as well and gets confused. When this happens he tries to walk away from where he is. He can usually take few steps before he falls. Thankfully there has always been someone in the bed next to him to push the call button. For some reason the social worker has not considered this in their assessment of dad’s needs. Dad spends most of his time in a very lucid state when the worker visits during the day. The doctors have told us that his confusion is coming from being in the hospital – hospital dementia – but we can all see that dad has changed a lot. He was originally brought in with pneumonia and they discovered he also had stage-1 lung cancer from being a long term smoker. They cleared up the pneumonia after a brief stay in intensive care and he has received radiation treatments for the lung cancer. They are confident he will recover but they also said he basically has enough lung capacity to keep himself alive – any physical activity is going to tax his lungs too hard.
So we really are looking at long-term care where my father is checked up on regularly at night to be sure he is ok and has two people available to make sure he doesn’t fall when he walks using his walker. Problem is, to get into a facility like that, there is a 6 month to three year waiting list and each facility has their own waiting list. ALSO, you have to go through a social worker to deal with Community Care Access Centre (CCAC) who then gets you on the waiting list with the 3-6 facilities that YOU feel meet your needs. My mother is running out of steam trying to deal with the changes in her life.
I visit him from 7pm to 9 or 10pm on as many nights as I can during the week and usually on one of the days on the weekend – during those times he is the same cantankerous old man he usually is. We watch movies and chat. I have a wife and child and they have been very understanding of my desire to go hang with dad at night. But this has been going on for months now so it is hard on the family and not fair to my child that dad is going out 4-5 nights a week. Also, with the parking fees, it’s hard on the pocketbook as well ($13 a day, $40 a week or $120 a month) and the 30 minutes of driving time back and forth to the hospital.
I’m pretty sure this is more of a reply thank you were expecting, but I’m also sure this is pretty much the reality for many many other families. We just don’t have a roadmap to follow that tells us how to navigate this. Dad is stable now but we can’t get him into a long term care facility any time soon and the hospital wants him out. We can’t take him home and we can’t send him to an assisted living home because they can’t give him the care he needs and mom is 80+ years old and can’t make up the difference. Also, if dad stays where he is, he is going to continue to degrade mentally from looking at the same four walls all day long at the hospital. From your previous article, we know that we need to get him out – he will be able to socialize and be more active. It seems to be that getting him into the long-term care is the biggest barrier to my father’s recovery.
Thanks for at least letting me vent,
Rich
Rich,
I am glad you wrote out your father’s story as I’m sure many patients will benefit from it. Your issue should be a straightforward one: placing your father in the right care at the right time. But as you have found out, this isn’t always the case.
It sounds as if you have found out the hospital is not the right place for him to convalesce and he needs a long-term care facility. Has the CCAC been able to line up any care for him during this interim time? Even if he had a place where he could stay with home supports, that could help until he is able to get into a long-term care home. If a CCAC went to his home and did a falls assessment, that could help.
Alternatively, if he went into a long-term care home that is not his first choice might be an option until his first choice presented itself. I am assuming you have exhausted other avenues such as determining whether there is any supplemental insurance of your parents that may cover some additional nursing care at home.
The strongest piece of advice I would offer is to find out what the plan is because you are correct, you do not want your father to further deteriorate. The CCAC should be able to work with your family to help your father find the correct care upon discharge.
And Rich, you are not venting. I am happy to listen. Please do let me know what happens next. Lisa
Thanks Lisa,
You mentioned, the “Not our first choice” placement – We have a minimum of 6 months to wait for long term care and we heard that once you are placed somewhere, you lose your priority and then it is even harder to get placed where you want to be.
Is this the case?
Hi Lisa,
This is so close to our families situation that I am on the edge of my seat waiting for your next article about what to expect after discharge! My mother is searching for long term full care homes for my father and because of the expense involved, she will probably end up selling her house and looking for a new place for herself to rent.
I can’t imagine that this is the best way to go – just seems like we are extending my father’s hospital stay somewhere else at our expense and now my mother is going to be out of her home. At least at the hospital, my parents are not draining their resources paying for my father’s care (Canada).
Any follow up would be well appreciated.
Rich,
Thank you for writing in. This sounds like a very stressful situation for your mother and indeed, for the rest of your family.
Is your mother looking for long-term care nursing home or a retirement home?
I know the costs are different in each province but typically, the health care provided in nursing homes is funded but not the “living” part of that care. The room and board is paid for by patients. Retirement homes are not regulated by government and therefore more expensive.
Is there anything I can do to help? Lisa