As a long-term care clinician and a medical director, I worry about COVID-19. I am responsible for mitigating the risks of COVID-19 and other outbreaks but I am also keenly aware of the dangers of prolonged isolation on residents’ well-being.
While I struggled with the dilemma of virus versus visitors, as a palliative care practitioner, I know the importance of family and friends to overall health.
COVID-19 has exposed the ills of long-term care but I hear words like facilities, beds and dollars when I hear talk about solutions. What we need to hear are words like people, time and quality of life. And we need to talk about a palliative approach to long-term care because the very words symbolize the quality of life we all seek.
We call it long-term care but for those living there it is their home, or it should be. Throughout society, what we have failed to face is that it is often a person’s last home. A long-term care resident is most often elderly and fast approaching the end of life, with an average time from admission to death of less than two years (CIHI 2018).
This is not the time for heroic measures and unnecessary trips to hospitals that often fail to extend life and instead cause more suffering and complications. It is a time to focus on living as well as possible until the end of life, based on an individual’s values and needs. That’s what the palliative approach means. It is not a resignation or a giving-in to death; instead, it is embracing life and all that we are – physically, emotionally, socially, psychologically and spiritually. And it is not just a checklist of tasks – toileting, bathing, feeding and medications – instead it focuses on quality of life.
Intrinsic to both home and quality of life are human connections. Emphatically, in long-term care, those social connections very much include the people most ever-present in a resident’s daily life – the staff. To deliver genuine compassionate and resident-centred care, staff need a few things. For nurses and personal support workers (PSW), limiting work to one home can bring job stability and a personal sense of security and – importantly – allows the staff to get to know the residents and develop those human connections.
Everyone working in long-term care – physicians, nurses, PSWs, allied health providers, administrative staff and volunteers – need to understand the importance of quality of life and deliver it with a palliative approach to care. Fortunately, that approach can be learned. There are excellent training opportunities available, including an online course through Hospice Palliative Care Ontario.
Finally, staff need sufficient time. Quality of life care is not a checklist of tasks completed by a schedule within prescribed hours. Staff need time to genuinely check-in with residents and their families to ensure that physical needs are being addressed while the core values of the whole person are supported.
So, while we work to fix long-term care and talk about systems, standards and bed counts, I strongly urge everyone to remember that we are talking about people – people for whom long-term care is their home, and likely their last home. We all need and want a good home and a good quality of life. Both of these will be realized by familiarizing ourselves and getting comfortable with the palliative approach.
Photo by Johnny Cohen on Unsplash
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I agree with what you have said and we were told this was my husband’s home when he went there last November, but now it’s more like a jail than a home and the “prisoners” and their families have no rights whatsoever. Covid is a worry for sure, but they have a better understanding of it now and how to avoid it and yet, and yet even though the rest of the society has adapted and moved into stage three the LTC homes are still in stage one. It’s kind of like throwing the baby out with the bath water. It’s time to open these places up and let these people enjoy what little time they have left. After all it’s not like they have 10 years to catch up on what they have missed. So incredibly sad and I can’t believe it’s happening in Canada.
Excellent article–thank you ! I am a retired palliative care nurse and have been teaching since my retirement– to LTC and retirement staff -and so agree that we can not forget the “person” – who deserves quality excellent care !
Amen and amen!!!
excellemt well written article and much to not just think about but take specific actions on by families and staffand above all by leaders in conglomerates who now dominate not just LTC but also the whole field of seniors living including seniors independent living and assisted living facilities , memory care units which are often all mixed in one facility. These corporate leaders who came to this field from hospitality , hotels and tourism areas and see every senio as one and the same despite corporate programs stating each one is unique.Treat all seniors as being too old to he able to make decisions or be involved in decision making and to be tended to as one in bed / room all day and not needing to be involved when care given. The other issue is they see each person like a hotel guest or a tourist visiting their place or city. They do not see the retirement place as their home, their community but instead as place where they provide activities for a short time ]using their hotel / hospitality background experience and see the care component through the eyes of the nursing / health office in their hotel or hospitality centre not as integrated part of care .Therefore, care approaches seen as line items on a bill and which can be added as a packageand people organized and categorized by what additional options they need / want. Care itemss not integrated with activities so no integration of safety and infection control with activities until outbreak for example and new policies of facility are not considered for all aspects on by integrated team including care leaders proactively or care leaders involved in initial entry interviews with resident or family so no inclusion in decisions as to what needed for successful transition to retirement living or any level of seniors living. Advertising when new seniors facility and new approach to services for seniors reflects hospitality backgrounds as new facilities built t reflect going out to various in-facility restaurants of different types for ALL meals with expensive suites NOT having adequate facilities for those independent or assisted living seniors able to entertain people in their suites [Example only microwave and wine fridge even for independent !! Facilies refelect those seen when on tour or cruise.Going out for m=every meal gets olf=d soon and not reflect reality of health issues and age even fr healthy.Also, major impact when outbreak and have to shut down facility until over COVID may require this new concept to be reworked !!. Reality that these corporate conglomerate executives have to realize is that the change to retirement living and seniors living at every level of seniors care is a major lifestyle change and will need to be individualized and open to change as person’ s helth nd other factors ichange.The other change these corporate leaders need to realize that unlike hotel and hospitality that can have national standards and policies, that facilities for seniors at all levels and all types including LTC include a care component and in Canada that means the conglomerate needs to adapt policies and protocols for each province as key aspects of seniors care like health care, seniors services, legal aspects like family law, privacy etc are all areas of provincial responsibility and laws .Thus, these facilities need to meet the provincial standards and protocols and NOT have the conglomerate national policies being the requirement especially when it comes to care!! As a nurse with many years of experience in both bedside care and administration and now living in seniors housingm see the struggkes and areas of mistakes, confusion that occur and where lack of integration and coordination leads to major issues now being seen, Government also had / has role as they allowed this area to remain only area for privatized care under our system and thus seniors who have paid taxes et fr health care for example cannot have access to home care services if living independently in seniors residence or assisted living like they could if rent apartment or in own home.Even in province where do allow Home Care in seniors residence, when new facilityor new owner government allows conglomerate not to include HomeCare Services and only tehir own care packages!!. Question who sets standards for packges and do they reflect provincial requirements /standards or national standards of conglomerate ,Najor area of breakdown /confusion and errors which believe major issue in current COVIiD. Need to ensure corporate leaders have care perspective .Thank you.
Thank you for highlighting a palliative approach in LTC environment. I hoped you would come out more strongly to recognize designated family as essential visitors as a result. If two years is the average, many residents have already lost 20% of their remaining time to be with family.
Excellent article. After watching my husband pine away for 2 years in a Brantford area LTC home, I could not agree with you more. It is time for more staff and better training (especially for PSW’s ) so they can have more personal time and conversations with the residents. It is such a difficult time for residents. None of them want to be there so existence should be made as pleasant as possible for them.
Thank you, Janice, for this thoughtful and well-informed article. When I talk to people about the crisis in long-term care, I remind them that these people are someone’s mother, father, brother, sister, dear friend, or child. They are not somehow less important than others who are stricken by COVID-19. As a society, we need to rethink how we care for people in their later years, and how we ourselves want to live until we die.
Every word of this is so very true.
Personally I would like to see the training course mention byJanice put into action here in the UK It could come with a certificate assuring that the person who has undergone the training qualifies for higher pay and full rights as an employee.
My own sister only this week passed away but although in a superb local care home the end of life system here meant several painful,distressing trips to hospital for pointless reasons
A couple of things in this article red flag for me Dr. Legere. First of all the effects of COVID and isolation on the well being of ltc residents, it goes way beyond that, the effects of isolation is literally killing them! Say it like it is, this article sounds like you are trying to placate people. Second, giving staff a course in palliative care and not following up so that they can do what they are taught is a waste of resources. More properly
trained frontline staff are desperately needed so that we can stop treating these seniors like pieces of meat for profit! Each and everyone of them deserve respectful, compassionate care. The last thing I want to say is that I am glad that you understand the real meaning of palliative care, many don’t. I spent 30 years working for the Ministry of Health as professional, certified palliative care aide and I feel that, although you have the knowledge, it would be helpful for this article to have stronger wording, stronger advocacy, the situation in ltc today is not all roses and sunshine and cannot be fixed by these! In conclusion I would like to thank you for the work that you do and please acknowledge that you have received and read my comments as a professional courtesy.
Good morning,
I am not quite back from a vacation and just catching up on my travel day.
This is to acknowledge I read your comments.
I would encourage you to write a piece, with your experience and passion it would keep this conversation alive!
I am writing both a new model of care for LTC and spearheading a group working on a canadian Framework… more to come.
Janice
Thanks Janice, very well said ! It is time that our conversation is about people, dignity and quality of life – not beds, buildings and bed-blockers.
After working as an RN for 20 yrs, I could not agree more. My heart is breaking now for the isolation of these residents, our seniors deserve so much more than they are receiving. We need to think outside the box, asking residents if they are able to tell us, what THEY want. I am sure that the majority of people I worked with would have chosen a shorter life with their family present, than a longer one in isolation. So much has been taken from them by this point in their lives, their independence and privacy, through ill health, we are taking away one of their last joys, meaningful human connection. Life is more than just breathing.
Excellent response!
Well said. Now let’s get the word out there to everyone. This absolutely needs addressed. Now not years from now
Absolutely right on!