This final chapter of the discussion paper considers assistance with the law, including supports to understand what options and services people may be eligible for, and to navigate the health care system and rights in health care. It draws on the lived experience of individuals who use the law, focusing on challenges that become apparent when the law “on the books” is implemented or when conflicts occur.
We begin by examining strategies to address the lack of coordination between care settings that persons typically transition through as they near the end of life (for instance, from home to hospital, hospital to long-term care home, or retirement home to residential hospice). Then, we consider ways to prevent and resolve disputes without having to pursue a formal complaint through existing administrative law processes. Finally, we conclude the discussion paper with a review of the need for greater public education on relevant laws, policies and programs.
At this time, we also remind readers that a comprehensive list of questions the LCO has posed in this discussion paper is listed in Appendix G, “Questions for Discussion”.
B. Navigating Transitions between Care Settings
1. Moving from place to place in the last stages of life
Nearly all persons who are dying will transition between care settings at some point in the course of their illness. Because the illness trajectory for each person is unique – it may be long or brief, relatively stable or fluctuating – a common feature of the dying process is moving from place to place, from one care setting to another in response to changing circumstances.
As we have mentioned previously in this paper, people in Ontario may receive care in a variety of locations, including their own homes through community-based services, long-term care and retirement homes, hospital departments and in residential hospices. When we use the term “transitions” in this paper, we refer to movement between these locations and also within them. For instance, a person in hospital may be transferred from the ICU to complex continuing care (for a longer stay) or to a dedicated palliative care unit.
Timely, well-coordinated and appropriate transitions are a crucial part of quality care for persons in the last stages of life. During the LCO’s consultations, stakeholders spoke about the value of smooth and appropriate transitions for persons who are ill, frail and vulnerable as well as for those who support them in navigating the system.
A key component of end-of-life care involves eliminating emotional, social and physical distress for individuals and their supporters. However, inappropriate or poorly timed transitions increase distress for those who are already in an emotionally charged and difficult situation.
An expert research paper that the LCO commissioned for this project confirms the importance of seamless transitions to the quality of care. Their report fills a gap in available information on Ontarians’ experiences with transitions by reviewing the literature and new evidence from statistical analysis and interviews. The authors, Donna Wilson and Steven Birch, explain the importance of transitions in the last stages of life as follows:
The ultimate aim of all [end-of-life] care efforts is a “good” death through a good dying process. Good deaths and good dying processes are extremely important to the dying person, their loved ones, their family and other caregivers, and society as a whole….
Of prime importance to a good death and a good dying process is appropriate and high quality care setting transitions. Mishap-free and mistake free care setting transitions are essential when moving from one care setting to another. Rapidly accomplished moves are also important when moving is required…. Every move has considerable personal, family, healthcare team, healthcare system, economic, and other costs.
However, many Ontarians do experience problematic transitions. The LCO was told that people are often transferred from one place to another when they require a higher level of care, rather than having services come to them. Stakeholders identified numerous examples of inappropriate transitions, including, among others:
- discharge from hospital to inappropriate settings such as hotels or shelters
- readmission of persons from palliative care to emergency room services, because the patient has exceed the hospital limit for palliative care
- hospital patients who wish to receive MAID at home may face challenges where the hospital physician or nurse practitioner is not permitted to perform this service outside of the hospital setting.
We heard that the process of transitioning between care settings can be lengthy, confusing and stressful. Within care settings, the situation can be much the same, as when a person waits in hospital for a palliative care bed or receives care from a new service provider who lacks necessary information, requiring patients to talk about their condition repeatedly.
Transitions can also be a source of conflict among those involved in making decisions about changes in care. For example, the LCO has heard several accounts of family members requesting transfers to palliative care, but being denied the opportunity to do so expediently by health care providers. (For more information on dispute resolution, see section C, below.)
Uneasy transitions are clearly a source of frustration for everyone involved. Service providers told the LCO that they would like constructive solutions that improve the “hand off” of their patients moving to another setting. Delays in processing transitions can leave residential hospice beds underutilized, increase hospital stays, and reduce the possibility that patient wishes regarding their preferred place of care are respected.
The lack of coordination among care providers was reported as a recurring theme in consultations for the Fraser Report as well. The Fraser Report found “The system struggles to ensure continuity of care, particularly when patients move from one care setting to another”.
2. Explaining problematic transitions between care settings
There are a number of explanations for why unnecessary, delayed or complicated transitions take place.
For the most part, these explanations do not lie in the legal framework. As has been noted elsewhere in this paper, there is no generalized right to health or palliative care. There are specific rights in law, although, as with laws related to the last stages of life as a whole, these are fragmentary, and tend to provide rights of refusal rather than rights of access. For example, while there is no right not to be discharged, to remain in a hospital bed or to receive palliative care, consent (by the individual or the substitute decision-maker) is required for admission to a long-term care home, so that an individual can not be discharged from hospital to long-term care without consent.
Rather, the causes relate mainly to health care challenges and resource constraints.
The inability to receive a level of care necessary to die in place was one of the primary reasons for transitions identified in the LCO commissioned report. Through an analysis of hospital admission data, Wilson and Birch found that the vast majority of persons who die in hospital after a transfer from a private home had not been receiving home care services. Notably, most of the persons who died in hospital upon a return admission in the last year of life had previously been discharged to home with no home care services. In addition, the LCO was informed that long-term care home residents may be transferred to hospital when they experience adverse health events nearing the end of life, because long-term care homes may not be equipped to provide end-of-life care as required by statute.
If individuals who are in the last stages of life can receive the care they need in their preferred care setting, transfers to other locations (in particular, hospitals) could potentially be avoided. However, there will still be clear instances where a change of care setting is unavoidable. For instance, a person’s condition may deteriorate to the point where they would benefit from the constant, intensive care that a residential hospice can offer. When transfers are necessary, they should be well-understood, fast and smooth. Yet Ontario’s system suffers from a lack of planning, coordination and supports for transfers.
Another practical concern arises where a patient seeks MAID at a facility that doesn’t offer it. While certain protections are proposed – such as the requirement to facilitate a referral – the patient may struggle to reconcile their values and wishes with their vulnerable state, and the desire to avoid moving facilities or potentially causing conflict.
Palliative care is provided as a service within existing regulated sectors, which are fragmented and have limited capacity to offer care that follows the individual throughout the system. Because care settings are regulated under separate statutes, funding structures and accountability mechanisms, the LCO heard there is often no legally mandated focal point to provide support with information about eligibility for external services and next steps. No one organization across the system is legally responsible for coordinating palliative care for individuals and families. Most moves are not planned, but reactive to acute symptoms or new care needs. As a result, individuals and families may be left to educate themselves about where to go for services.
Communication barriers between care settings are another major problem. Communication barriers include delays in forwarding medical records to new providers and a general lack of information sharing. The Fraser Report explains that poor communication results in confusion and stress for patients and caregivers. According to Fraser,
When a patient has to move between settings, communication is key. Everyone in his or her circle of care needs to know what is going on…. While the need for two-way sharing on information and coordination of care may seem obvious, it doesn’t happen often enough. As a result, patients and families – who are already under stress – may have to endure unnecessary duplication of tests and assessments, and longer wait times.
Wilson and Birch emphasize that because end of life care is not planned, managed, delivered or evaluated as a core healthcare program but is instead included in care delivered under other healthcare programs, there is a limited capacity to assess, plan and evaluate these services. These limitations in coordination and communication are a major cause of inappropriate care setting transitions, low quality care setting transitions, and the delay of necessary transitions.
Taken together, explanations for inappropriate, untimely or poorly coordinated transfers can thus be summarized as arising from these and other factors:
- difficulties receiving an adequate level of care in one’s preferred place of residence
- insufficient coordination and communication across care settings, which are regulated separately
- lack of supports for patients and their supporters navigating Ontario’s system.
3. Creating navigational supports for transitions
The care needs of persons in the last stages of life will naturally change over time. Depending on the circumstances, transitions from one care setting to another may be avoidable or they may be necessary. Quality care in the dying process demands that these moves be minimized, as much as possible, and that they occur seamlessly when they are necessary through careful planning, communication and timely transfers.
The Government of Ontario is currently taking steps to improve the coordination of health care across sectors to ensure that patients experience seamless services as part of its initiative, Patients First: A Roadmap to Strengthen Home and Community Care.
For example, Ontario is seeking to introduce “a bundled care approach, in which a group of providers will be given a single payment to cover all the care needs of an individual patient”.[82