What is the Last Stages of Life Project?
The Law Commission of Ontario (LCO) is Ontario’s leading law reform agency. The goal of our Improving the Last Stages of Life project is to identify and recommend law reforms in the “last stages of life.” This is a broad and inclusive term that allows us to look at rights and legal issues in end-of-life planning, palliative care, medical assistance in dying, and other issues. An important aspect of this is managing transitions between care, the subject of this backgrounder. This backgrounder is one of a series of consultation documents the LCO has developed for this project.
This document is a brief overview intended to raise issues and stimulate discussion for the purposes of LCO’s consultations. This document should not be relied on as a source of law.
What are the transitions in care 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. But the illness trajectory for each person is unique. People 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.
Why are transitions in care an important issue to consider?
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 preliminary 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.
What are some of the issues that arise with transitions in care?
Stakeholders identified numerous examples of inappropriate transitions, including:
- 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
- discharge from hospital to inappropriate settings, such as hotels or shelters
- patients who exceed the hospital limit for palliative care, and may be admitted or transferred back to emergency room services or into a long-term care home
- hospital patients who wish to receive medical assistance in dying (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.
- transitioning between care settings that can be lengthy, confusing and stressful
- family members requesting transfers to palliative care, but being denied the opportunity to do so expediently
- transitions to long-term care for Ontarians with disabilities raises concerns with the perception that long-term care is a form of “re-institutionalization,” and that long-term care homes are often not equipped to deliver personalized care for those with complex needs.
Explanations for these issues may not lie in the legal framework. The LCO heard that causes often relate mainly to health care challenges and resource constraints. For example, LCO commissioned research 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. And 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.
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, and the availability of a provincial information and coordination telephone service – 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.
Because palliative care is not planned, managed, delivered or evaluated as a core healthcare program, communication and service coordination barriers between care settings can be another major problem.
What steps are being taken?
The Government of Ontario is currently taking steps to improve the coordination of health care across sectors to ensure that patients experience seamless services. For example, Ontario is seeking to introduce “a bundled care approach” in which services will follow individual patients, rather than patients having to find and coordinate multiple providers themselves. Ontario is also introducing “self-directed care” to enable patients and caregivers to receive an allowance for purchasing services from providers of their own choosing. The establishment of the Ontario Palliative Care Network and of a provincial palliative care strategy also creates possibilities to strengthen palliative care across all care settings, which might also minimize unnecessary transitions.
Where can I get more detailed information on this topic?
The LCO’s Improving the Last Stages of Life Discussion Paper (May 2017) discusses the law and practices around transitions between care in greater depth. Specifically, see the discussion at chapter 7.B and 6.E. An experts report has also been commissioned by the Law Commission for this project that looks at “Improved care setting transitions in the last year of life”.
What kinds of questions is the LCO asking?
The LCO is interested in hearing feedback on steps being taken to address these kinds of issues:
- what are your experiences as a patient or caregiver transitioning between care settings in the last stages of life? How has a transition impacted or accommodated your particular needs?
- are law reform measures needed to improve access, navigational supports and the coordination of care within the health care system?
- what effective strategies, policies or supports for collaboration might look like? are there further measures that would complement announced government efforts?
How can I share my views on this issue?
LCO’s formal consultation period runs from May – September 2017. The LCO invites your participation through:
- The project website at http://www.lco-cdo.org/laststages
- Written submissions at any time to firstname.lastname@example.org
- Watch live and archived webcast consultation sessions
- Complete the consultation survey on your mobile, tablet, or computer
- Propose an in-person focus group for your community
- Contacting Project Research Lawyer Ryan Fritsch through the contact information below
Law Commission of Ontario Toronto (416) 650-8406
Project on Improving the Last Stages of Life Toll-Free (866) 950-8406
2032 Ignat Kaneff Building
Osgoode Hall Law School, York University Fax (416) 650-8418
4700 Keele Street, Toronto, ON M3J 1P3 E-mail: email@example.com
Written submissions will be accepted until September 29, 2017