Care for the dying has been an important and expanding function in Long Term Care (LTC). Over the past 10 years the typical length of stay has been shortened to approximately 18 months and the stay usually ends in death (Canadian Institute for Health Information, 2015). Many care centers have been supportive of a person-centered, palliative approach to care, but unfortunately, others have not made this adjustment.
Palliative Care, death and dying have been practiced, experienced, and accomplished in Long Term Care (LTC) for as long as these institutions have existed. However, until the first death from COVID 19 occurred and subsequent deaths, very few of the general population had any sense of what LTC looks like and how it is for the residents living there, and the staff working there. As residents and staff continued to contract and die from COVID 19 the lens on LTC, especially by the media, was adjusted and the government ultimately held accountable. Statistically LTC residents accounted for 3 % of the COVID cases and 43% of all deaths by COVID in Canada (Canadian Institute for Health Information (CIHI), and National Institute on Ageing; COVID 19’s Impact on Long-Term Care, December 9, 2021). This truth has led to changes in The Long -Term Care Act that include a need for adoption of a Palliative Care Philosophy in LTC. (Ontario’s Regulatory Registry. Fixing Long-Term Care Act, 2021; Phase I Regulations)
The Long-Term Care Act is now asking for the following to be adopted into LTC during Phase I. “Requiring that integration of a palliative care philosophy include a holistic and comprehensive assessment of a resident’s needs and when needed, improvements to a resident’s quality of life, symptom management, psychosocial supports and end of life care, always subject to a resident’s consent.” (Ontario’s Regulatory Registry. Fixing Long-Term Care Act, 2021; Phase I Regulations)
So, what does it mean to incorporate a Palliative Philosophy of Care? From Bill 37 (Part II) the elements that must be included are:
- Quality of Life Improvement
- Symptom management
- Psychosocial support
- End of life care
Let’s step back for a moment to pre-COVID. In 2019 people were moving into LTC for various reasons. Most could no longer function independently at home, even with some support. This may have been for medical reasons, such as final stages of a life limiting illness (Dementia, COPD, Heart Failure, Cancer…), a serious and poorly managed mental illness leading to an inability of the person to care for themselves, or the loss of a primary caregiver (often a spouse) due to death. The Social Readjustment Scale is a helpful tool that indicates all the losses many people experience prior to and on admission to LTC.
So why are people coming to live in LTC.? For physical care of course, and potentially for some improvement in function now that they have support, and the little talked about, but yes, to die. The first two items are always talked about as encouragement to come and live in LTC and in an attempt to persuade the person to leave their home and all that they know from a social perspective. Rarely is the person told that their dying time will probably come while they are living in LTC and that this will be their last home of this life.
So now the expectation is that discussion about the Palliative Philosophy of care is completed prior to admission to LTC. Wow! How is that discussion going to go when we live in this death phobic society where death happens to us, but really against our will. Many say, “we are born to die” and yet we see the struggle to even discuss what our death may look like and how we would like it to go. When we do talk about our death at all, it is way in the future, or we ask to prolong it and get “more time” for as long as possible.
Let’s briefly discuss this concept of “more time”. Stephen Jenkinson discusses this in his writing in Die Wise: A Manifesto for Sanity and Soul, 2015. People who are dying will ask for medical treatment to get “more time”. What they mean by this is more life or longer life, but what often happens is that dying is prolonged. The quality of life is not what people were hoping for and yet when treatment is offered, they grab the chance to have more time, not knowing what this will look like. With a Palliative Approach to care, we must be honest in our discussions with people. If they are asking for “more time” or being offered treatments which may give them this time, we need to paint the picture of what this “more time” may look like. Most are surprised that the treatment, at best will prolong their death, not improve, or increase the time of their living.
The requirement to now discuss Palliative Care prior to admission is really a requirement to discuss life in LTC and death during the stay. Re-thinking a palliative approach is so important for people so they to have a say in their last days of this life. Using a Palliative Approach to care means that conversations about how the person may die (disease projection) are discussed with the person along with any treatment options, quality of life and symptom management, and who their people are, including Substitute Decision Maker (SDM). They may come into LTC with an Advance Care Plan already in place and this would need to be revisited. Often no discussions about their dying time have happened and now it is up to the LTC staff to have this frank and difficult discussion perhaps for the first time.
Included in the new LTC Act is the need for consent to give care following a Palliative Approach to care. This has long been a concern for some working in the LTC sector, as people are often admitted to LTC because they are deemed incapable to live independently. This includes difficulty completing Instrumental Activities of Daily Living (IADLs) and Activities of Daily Living (ADLs) independently. Persons admitted to LTC often come with a broad diagnosis of Dementia and families, caregivers and staff often believe that this diagnosis predetermines that the person can no longer make decisions or give consent for any treatment or care. This belief is false. It makes great sense to always include the person coming to LTC in all discussions so that they have the opportunity to give consent.
The easiest way to talk about someone’s dying time is to respect their input. And listen. These difficult conversations need not be so difficult. Ask the person why they have come to live in LTC. They will tell you about of all the changes and losses in their lives. And here there can be hope! By living in LTC they are able to talk about their dying time coming, without it being minimized or brushed aside. They will see co-residents complete their dying here, and with an open discussion about this life ending soon, people can enjoy their lives without the doom of the unspeakable and not talked about event of their last days here.
Staff in LTC have such difficulty in having these discussions with people and yet these discussions should come so naturally, especially if people know that they are approaching the end of this life. And that is the key – people do not know that their dying time is coming soon. Instead, what is discussed is that the reason they have come to LTC is because they are no longer able to manage their life and health
independently, and they need a higher level of care. Families may, on some level, know that this is what is happening and still it is rarely discussed. Maybe if we don’t talk about it, it will not happen. Still, we will all die and come to this time in our lives.
We discussed the shorter length of stay in LTC from compared to the past. Most people who enter LTC will die there so length of stay is mostly a measurement of time from admission until the time the person dies. LTC staff members, thus, see a lot of dying. So why the discomfort in talking about it? We would expect that most staff have seen people go “kicking and screaming” to their death. But most have also seen what would be called a “good death” with pain well managed, and family supporting, sometimes in vigil with, their loved one until death. Most of the discomfort in talking about dying must then come from the not so pleasant view of dying. As well, when the dying person does want to discuss their imminent death (which they instinctively know is coming soon) they get told statements such as “don’t talk like that, you have years to live” or “don’t worry, you will get better.” Yet we must question why we would worry about dying when we all know that all of us will die?
Of the 4 elements that need to be included in the palliative philosophy of care, one of the most difficult requirements may be quality of life. Quality of life is a subjective experience, so how do we even measure that? This question should be asked of the resident. But is it? For many people entering LTC making decisions is not left to them. Caregivers and family members make these decisions because “the person is not capable.” That is why they are coming to LTC. And yet the language is very clear that we must have the resident’s consent for decisions. Capability is not a black and white status. It fluctuates and where people may no longer be capable to look after their own finances, for example, they can decide if they want a certain treatment or another, whether they want to proceed with their dying in LTC or whether they want to have treatment (if possible) in another setting. To ask these questions of a resident, they must first know that they are coming close to their dying time.
Having that frank and honest conversation with someone can be a synergistic time for all involved. How freeing it is to talk about your own dying, when you know you are doing it, with someone who is comfortable talking about it. I have been with so many people who are dying and there are common themes which can make these discussions much easier to have. First of all, look to the psychology world where Erikson says that people progress through stages in their life, and which way they go can greatly influence quality of life and death. For the population living in LTC we will look at 2 Stages. Age 40-65 years old is covered by Generativity versus Stagnation. Age 65-death we look at Integrity versus Despair. So. if we do not encourage conversations about what coming to LTC means we will often see stagnation and despair. When speaking to many staff working in LTC, what they see is older people, with many losses recently in their lives, brought to LTC by family and left there without having a sense of what changed in their lives to bring them here. The Palliative Philosophy brings an honesty to the conversation. Yes, you will probably die here, but how can that life look before death. Is there an opportunity for Generativity and Integrity? Probably not if the person being admitted is not involved in the conversations. It is important for staff to have the person being admitted present and giving their consent to all care offered. No matter their capability, they should be present and included always in these conversations. (Erik Erikson’s Stages of Psychosocial Development. (Kendra Cherry, July 18, 2021).
What we have also seen is that at the end, just before death (weeks to days), people struggle to leave their legacy. Legacy leaving is interesting, but what we see is an attempt, often very late, to show one’s true self or self actualize (as Maslow would put it). How one shows their true self would mean another article, however in simple terms it means showing who you are from a strengths and values perspective, being free now of all defense mechanisms and maladaptive behaviours. We often, throughout our lives put up walls and wear different faces, our perception being that we will be more pleasing to others if we act the way we think they want us to. This does us and others a disservice, and at the end of our lives we try desperately to come clear of this.
We also see such mystery around our dying time. Again, do we ever talk about this to our residents. Do they know that near their death they will probably see their dead (loved ones who have already died) and that they will find great comfort in this? Most of us, who have worked in LTC have seen these mysteries. What a great opening to relate these stories to move to a discussion about your resident’s dying time. We need to find out what quality of life means to them, and it goes beyond symptom management. It is so much about leaving a legacy of who they are for those they are leaving in their dying.
In summary, we are regulated now to provide a Palliative Philosophy of Care to all residents in LTC. As noted, consent for this care must be given by the resident. Let us proceed with the honest conversations, which, yes, are sad in that we will all die and leave this life as we have known it, but what a glorious time this dying time can be if we just open up to its importance as the last significant act we will do in this life.
Franzis Henke, Nurse Practitioner As a Silver Meridian Associate, Franzis provides extensive expertise in Palliative Care, working with the dying and their families, Geriatrics, and Geriatric and Adult Mental Health. Silver Meridian is pleased to present a new program, developed and presented by Franzis, “New Approaches to Palliative Care in LTC: Embracing the Opportunities” starting in early July. Details for this 10 hour accredited CEU certificate program are available at https://silvermeridian.com/resident_focus/new-approaches-to-palliative-care-in-ltc/