Monday, June 1, 2020

Rethinking nursing homes. Supporting community based care.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

The recent reports of nursing home abuse and the horrific number of COVID-19 nursing home deaths, and other nursing home deaths, should make not only think about improving nursing home care but to rethink nursing homes.

Canadian military report recently uncovered disturbing conditions in Ontario nursing homes from unsanitary conditions to an alleged choking death that was caused by improper feeding practices.

The response that we are hearing is that we need to improve nursing homes. I agree that existing nursing home care is often substandard, but the answer to the problem is to move to a system of home care.

Canada appears to be committed to providing institutional care for our elderly citizens even though the system of institutional care is broken, expensive and does not provide the care that people want or need.

Fiona Whittington-Walsh in her article published in examines the problem by comparing the experience with COVID-19 in Denmark to Canada. She writes:

Denmark has a home-based care policy priority for seniors, and has transformed its senior care delivery model into a community-based model -- and has not invested in new congregate facilities since 1987. Reducing the number of nursing homes was matched with a steady increase in the number of home nurses. The decline in long-term congregative facilities for seniors in Denmark is evident in the fact that as of April 24, 2020 only 33 per cent of confirmed COVID-19 deaths were connected to these facilities, while in Canada, 62 per cent of all confirmed COVID-19 deaths are connected to such facilities.
Whittington-Walsh then refers to an Ontario study  suggesting that home care provides better care and is also economically a better option. 

Paul Caune
Whittington-Walsh explains the benefits of home care with stories of people with disabilities. Paul Caune, a disability advocate who was born with muscular dystrophy was at one point in his life forced to live in the George Pearson Centre in Vancouver. Whittington-Walsh writes:

Caune's experiences at Pearson were traumatic. For two years he lived in an environment of fear and abuse. He and the other residents lost their autonomy, lacked basic rights, were forced to abide by curfews, were confined to their beds on scheduled bowel movement days, were only allowed one transfer in or out of bed per day, and were forced to take anti-psychotic drugs to keep them placid. It is the institutional model that is the problem, and Caune's experiences are consistent with the current and historical examples discussed in the first article. 
Caune's battle to ensure home care for people with disabilities is also relevant for people living in nursing homes.

The report of the Parliamentary Committee on Palliative and Compassionate Care that was published in November 2011 is a fundamental guide to moving healthcare systems forward. 

In its recommendation XV on page 52, concerning Palliative and End-of-Life care the report states:
Home care is foundational to transforming Canada’s health care system. In reality it is a paradigm shift in our vision of health care. Allowing patients to stay at home has pronounced benefits for everyone involved, not least of which, the person being cared for in their own home and community. This is important as our nation seeks ways to improve the care of the elderly and vulnerable. 
...A continuing care system can relieve burdens on the acute care system, in a way that doesn’t harm quality of care and perhaps even enhances it. This is not to deny the importance of surgical, diagnostic and specialist interventions, clearly the domain of the hospital. We now know that the majority of care that can be delivered to a person with chronic conditions in an institution can be delivered just as well at home. Home, family and community are too fundamental to the identity of the person, to be ignored in the basic care of the chronically ill or dying person.
The recent military report on nursing home abuse in Ontario confirms the truth of what the community living movement believes, that it is essential for all human beings to have equality and inclusion in society. Institutionalizing people with disabilities or the elderly leads to exclusion and discrimination and eventual abandonment.

I believe in the philosophy of the community living movement and I recognize that the needs of people with disabilities can be very similar to the needs of the elderly.

Canada needs to stop building institutional care that requires people to fit into a model of care that does not provide them with the options that they want and does so in a restrictive and expensive manner.

Canada needs models of compassionate community care. A model that cares for people in their home and community that doesn't segregate people and provides them with the respect and dignity that they deserve.


Unknown said...

I am a therapist who has worked in a number of nursing homes and rehabilitation centers.
The centers are for profit. Profit is King. One of the biggest impediments to adequate care is sufficient staff. Centers keep staff low to make more money. Staff are expected to provide "care" for far too many people. Lower level staff, personal care attendants, or CNA's, are expected to get residents up, clean, and fed by about 7:00 a.m. People are roused out of sleep around 6:00. They may have 10 or 15 people to get ready.
The lower level staff often comes from other countries, so often, the residents are hearing them speak to each other in a language they don't understand, when they are trying to simply understand the language they know. I have seen TV's, the only source of stimulation for some, turned to stations with foreign language programs on them, while staff is in the room, they can watch TV. Staff deserves good pay and appreciation, but they don't get it, generally.
Staff also need to be heavily monitored, especially at night when staffing is low. While it makes privacy tough, cameras need to be installed in all areas and monitored. There are too many people who have nefarious reasons for working in nursing homes. Recently in the US there was a "fight club" where staff pitted residents against each other to watch bouts.
A younger resident in AZ became pregnant. She was nonverbal and confined to her bed. A male nurse was arrested. It is horrible to even consider the sexual abuse that must go on as personal care is provided. But nursing homes continue to keep staffing low to save money, and they don't pay enough for this tough job to attract higher quality staff. They pay the minimum they can get away with to provide the most important job of the physical care of very vulnerable people, our elderly.
I have seen people over 90, with no teeth, who can barely get spoons to their mouth, fed in bed with a tray they can't access. They could easily choke to death as they are behind a curtain, eating by themselves. If they eat, or not, it's up to them. Sometimes they are almost force fed. I do not wish to take away from the many wonderful people caring for the elderly. When these people are good, they are angels, and they deserve twice what they earn currently. But there is not enough oversight, and residents are put at great risk.
If you have a loved one in need of such care, find the BEST possible center, get recommendations, read Yelp reviews, contact the state and see what you can find out about complaints, etc. Ask therapists for referrals if you know one. Then, be that active family member who shows up and asks questions. Your loved one will get BETTER CARE if you are involved. Do not look at it as, I'll be quiet and they'll like my family member more. No. Staff respects and knows who is watching and expecting better care. If you see something you don't like, for God's sake, SAY SO. Say it politely and by giving staff credit, but do not let those things go by. The squeaky wheel does get the grease. Take care of your loved one by being their advocate, if you truly love them, you'll do it.
If people are at home, they are subject to abuse as well. Cameras and monitoring are the only way to go. If an elder does not like someone, pay attention to it. They may have a reason.

Diane Coleman said...

Nice to see this article. Disabled people in the U.S. have fought for in-home long term services and supports for decades, gradually winning the freedom of more and more of us, at all ages. We still have a long way to go. I hope that COVID-19 has exposed the fact that nursing homes are the wrong solution to a pressing need in our families and society.

Anonymous said...

Thank you for the time you took to share Evangeline! God bless you!

Denise Barker said...

Death is a money-making business, and nursing homes have it down to a science. People come and go so regularly, it's like a turnstile. The staff have shown me that they hate the vulnerable left in their care - and they have murdered many, my mother was one. She got an infection throughout her body, yet they kept her in a comatose state and lied because they told the rest of the community that she died of a heart attack -- SHAME, SHAME, SHAME ON YOU!! It is serious, some staff should be in prison.

sophie jensen said...

I worked for several years as a Manager for a Community Care programme, organising services for elderly and disabled people in their own homes, in order to keep them out of Nursing Homes, as part of a government strategy to save on the costs of care and keep people out of Residential Care. Nursing homes have problems, and so does Community Care. The former because of lack of funding and desires to cut staff, the latter mostly because of the unscrupulous operators who see the scheme as a Cash Cow. So my suggestion would be to keep people within the family group. This is easier said than done, given that most middle-aged people are still working to pay off their homes, and so on. In my view, what we need is better strategies in caring. For example, I once did an overnight shift (because of lack of staff) with a man in his own home who was suffering from renal failure. His wife had been run ragged looking after him. I whipped an incontinence pad onto him, and she stood there going 'how on earth did you do that?'. Trick is to hold pad with knee and use two hands to stick it together. She said it had been a major issue for her. This is one example of how teaching people to cope might work better. I recently read a submission to the Australian Royal Commission into Aged Care, which talked specifically about strategies. I have thought about it myself, many times, but have not yet done much about it. She recommends several things, among which are: shared responsibility; strategies to ensure safer houses; multi-generational living; safety concerns such as with showering, toileting, cooking, heaters; access to easier phone systems; looking at travel issues; the internet; changed food and medication needs; assistance with banking and bills; social contact; help with shopping; reporting on abuse; basic hydration and dietary needs; access to incontinence aids; aids for the kitchen; aids for walking and climing up and down stairs; the installation of handrails and grab-rails; and how families might cope with small medical emergencies. It will always be cheaper to look after a family member than to sell their home and place them in care. Sure, it might not be easy, and it may take a bit of effort to set up, but the Residential Care System is not working in Australia (and probably not in any other country either). Community care, as I said, has its own problems, not the least of which is the extended wait for a Care Package. Does anyone have any suggestions about how to educate people to care for their relatives in their own home? Or any experience of it?

Anonymous said...

Dear Sophie, in response to your question regarding experience with taking care of relatives in their own home, I moved back to my elderly parents' home in 2013 as their caregiver. My father passed away in 2016 and my mother in 2018. Yes, it was challenging at times, but the rewards and joys far outweighed the burdens, and I would gladly do it all over again! I had no prior medical experience or knowledge. After a fall in 2014, my father lost his mobility, and the hospital sent him to a nursing home for so-called rehab. That was a disastrous six weeks that almost killed him. We had to battle that place to bring him home, after which he began a remarkable recovery, until unfortunately, terminal mesothelioma reared its ugly head about a year later. But I wouldn't trade that extra 14 months at home we "bought" for him for anything! We had a mini-hospital for him: hospital bed, medical and hygiene supplies, 2 types of lifts, wheelchair, bedside commode, physical therapy provided by a home health agency, and most importantly, very competent and caring certified nurse's aides. They gave me the bulk of my training. I had to have help for my father, who was a big man, but at least half of his care I handled myself, and later handled the vast majority of my mother's care myself, at home, since she was much smaller. I did my own research and learned about some local community resources, but mostly I credit our wonderful CNAs. Through various contacts we were blessed to have CNAs who also worked in care homes, and I found that they were generally far more knowledgeable than the typical nurse's aides hired through home health agencies, for short stints of care when our usual CNAs weren't available. For example, the nursing home CNAs knew how to use lift equipment (and trained me to do so), whereas the typical agency nurse's had never even seen them. The nursing home CNAs also knew how to spot and address problems such as potential pressure ulcers and alerted me to a number of issues. Later, when Dad was on hospice care, they knew immediately how and when to get him hooked up to the oxygen concentrator--and showed me how. I also had good support from other family members, neighbors, and friends. Other family members and I pooled our resources to buy a good second-hand (and thus reasonably priced) hospital bed, wheelchair, 2 types of lifts, and special walker. We were easily able to sell these items later on, when no longer needed. After my father died, we took out a home equity loan on my parents' house to have more cushion for Mom's future expenses, but we actually didn't need to use much of it. All of the equipment, supplies, and knowledge I used for Dad's care I later used for Mom. The bottom line: Home care is well worth it and probably will be less expensive than you think. In my case, I brought in the help we needed, had them train me, and used them and family to give myself some respite as well. I hope this might be helpful.

sophie jensen said...

Brilliant input, Anonymous. Thank you.
I also came across a site (in Australia) recently where people can pass on care equipment free to anybody who needs it. They, in turn, can pass it on again. So, if the cost of care aids such as lifters is huge, then it can be shared by many. Sometimes, also, these kinds of things can be borrowed from hospitals. Minor stuff, that is. But every little bit helps.
Thanks again.