“The whole process of getting her (home) and set up was turbulent and haphazard.” That was Stephen Petri’s experience when his mother was transitioned from in-patient palliative care to her home for her last week of life.
Renata Petri became comatose after being hospitalized following a severe stroke. Based on her prior expressed wishes, Stephen worked with several teams including the inpatient palliative care team to transition Renata home for her last week of life. Once home, she received care from a home-based palliative care physician, nurses and a personal support worker.
For Stephen, the transition process was “rudderless” and caused a great deal of distress. Despite the homecare Renata was receiving, Stephen was “running almost on a 24-hour schedule” and worried about his “physical and emotional stamina.” He had to navigate a complex transition process that had “very little oversight” and disjointed communication: “We had to wait, wait, wait, wait, wait and then the information came like a sledgehammer, and then it was, ‘OK, what do you want to do?’ So, it felt very abrupt to me.”
Stephen said he was overwhelmed by competing work and home obligations and that he had not been “guided through how to monitor and what to look for (in his mother),” creating additional anxiety and stress in the days leading up to his mother’s death.
Unfortunately, his experience is not unique.
Our research has demonstrated that hospital-to-home transitions at end of life are tremendously fragmented, resulting in patient and caregiver distress, errors, miscommunication and prolonged hospital admissions. These problems have been exacerbated during the COVID-19 pandemic as caregiver and family presence has been restricted in hospitals despite the fact that family members are essential partners who oversee an often chaotic transition process. There is a critical need to invest resources to restructure transition processes and to support healthcare providers in improving the transition for this vulnerable and often overwhelmed group.
Transitioning from hospital-to-home is common toward the end of life as many individuals with terminal illness wish to die at home. Being at home enables patients to spend meaningful time with family members. For Stephen, it was the “luxury having your loved one make their final journey in their home.” Since Renata was calmer at home, Stephen could monitor her overnight and avoid the logistical challenges and exhaustion associated with back-and-forth travel to and from the hospital. Family and friends came to visit, allowing Renata to “say her goodbyes to people.” With visitor restrictions in hospitals, dying at home means maintaining dignity through family and human connections and in patients’ final days.
Transitions across settings can be challenging for healthcare providers, caregivers and patients. Poor transitions at the end of life can lead to complications and rehospitalisations due to deteriorating health and increased care needs.
As have many others, Stephen experienced delays in discharge, issues with the ambulance company, cancellations from homecare providers and delays in medical equipment setup. He said that while individual providers during the transition were “fantastic,” “the orchestration (was) not so great.” Our qualitative meta-synthesis on healthcare providers’ perceptions of the hospital-to-home transition at end of life shows that many diverse providers are involved with this transition, which contributes to a lack of care coordination and continuity of care. Patients and caregivers often feel overwhelmed by the sheer number of people involved. Said Stephen: “I started getting a whole series of random calls from random individuals.”
The challenges are further exacerbated by marginalization and COVID-19. Our research has shown that non-white patients and immigrant patients are more likely to be discharged home from hospital toward end of life than white, non-immigrant patients (the manuscript is under review before publication). This is important to acknowledge as poor transitions will disproportionally affect populations that we know already experience many other barriers in accessing high-quality care.
As Stephen highlighted: “I’m a very capable organizer but if it was a situation of somebody who doesn’t have English as their first language or is elderly or is a little bit overwhelmed emotionally, this could be a very, very, very stressful transition.”
Our research was conducted pre-COVID-19 and we know that COVID-19 has magnified existing inequities. With families and caregivers not permitted in hospitals, terminally ill patients somehow need to advocate for themselves, inevitably leading to poorer transitions.
Over the past three years, we have researched solutions to improve the transition and explored how to build on these solutions. Evidence-based interventions include screening patients to identify who would benefit from palliative care consultation, using palliative care as a discharge planning team and having palliative care providers conduct pre-discharge and post-discharge follow-up with patients. All have had positive outcomes, helping to reduce patients’ hospital readmissions and increase support services in the community.
However, these interventions have not focused on the patient or caregiver perspective. We therefore asked in a qualitative study what they believed to be important. Patients and caregivers said their health and safety need to be a focus; practical needs must be met before they can go home; and the entire transition should be experienced as a seamless process. A participatory design installation based on these findings, showcased at the DesignTO festival, gathered impressions from attendees. We found that attendees emphasized the emotional and interpersonal needs of this transition: feeling overwhelmed, hopes for a comfortable experience, and regrets regarding past experiences (the manuscripts outlining our findings are under review.
To fulfill these needs, we identified key areas that would help improve the transition: recognizing the caregivers’ role in facilitating transitions; community support; psychosocial support; education; communication and coordination of the transition; and financial resources.
Study participants had suggestions to improve the transition process. Stephen advocated for a designated service provider who would “manage and facilitate the process, organize the steps and timing.” He also suggested the creation of a binder with information that “outlined everything that’s going to happen from the hospital end, from the ambulance end … from the pharmacy end.” Our findings overlap with the quality standards released by Health Quality Ontario in 2019 regarding transitions between hospital and home.
End-of-life hospital-to-home transitions can be chaotic and cause harm to patients and their caregivers. Yet the emotional and physical burdens that accompany transitions can be addressed with specific solutions. In Ontario, there is minimal funding and few policies that prioritize transitions despite the fact that they can save healthcare systems significant amount of money by avoiding prolonged, costly hospitalizations.
Beyond investment, we need further engagement, empowerment and training of healthcare providers. The research clearly indicates that palliative care providers can have substantial impacts on ensuring safe, seamless transitions home when they are driving the process. We recognize that palliative care already takes the lead on many gaps in the system and we do not believe that the responsibility should be downloaded onto palliative care alone. Rather, we propose that along with the Local Health Integration Network, palliative care providers take leadership in transforming the model of care and advocating for further investment and policies that support seamless transitions.
Given the potential impact this can have on our most vulnerable and neglected populations – the frail, the elderly, the racialized, non-English speaking immigrants – we need to make seamless transitions home a clear expectation of care. One thing that COVID-19 has surely taught us is that marginalized communities are at greater health risk due to systemic gaps in our system. We need to completely rethink our priorities in caring for these patients and their caregivers whose traumatic experiences may have been neglected or not fully recognized in the past.
Change is necessary. That is clear from the research and from patients and caregivers. It is up to the policymakers and healthcare providers to listen and implement solutions.
Acknowledgements
We would like to thank Trevor Morey, Tieghan Killackey and Kirsten Wentlandt for reviewing drafts of this article and providing feedback.
The comments section is closed.
Integrating care across provider groups in a way that makes patients and caregivers feel confident and supported At transitions and handoffs is the achiles heel of Modern healthcare. I have heard many providers say they are doing it well (Can you hear them right now?) yet patients and caregivers rarely agree. It means sharing power and doing what you are asked and when. I have been in it several times and it never gets to best.
Thank you for this article. Now that we know “what” is needed by family caregivers, as per your evidenced based research, please educate us (families) regarding the “action plan” for your findings. To whom did you submit them? What will they do with this information (their role) and to whom are they responsible for passing along your findings? Who is responsible for ensuring listening occurs, solutions get developed. Who will be involved in developing, communicating and implementing solutions?
Families with these “high needs” you describe need to know how to contact policy makers and which health providers who are responsible for listening and implementing solutions. We are profoundly impacted at this time and need to ensure our loved ones receive the best EOL care possible. We want our remaining time with them to focus on our relationship, ensuring it has meaning and value. We very much need support with anticipatory grieving, knowing our lives will be permanently altered, by the loss of our loved one. Please, please provide direction, contact details of whom to contact, so family caregivers may follow-up. Again thank you for this timely article and your consideration of my request. Look forward to your reply.
Dear Denyse,
Thank you for sharing your concerns. I appreciate your enthusiasm for this work and desire to support positive change for patients and their caregivers.
In terms of our action plan for our findings, we have several initiatives underway. We have published our findings in peer-reviewed academic medical journals and presented at several conferences. This usually targets fellow researchers working in this space, though there are some policymakers who also read these publications. We have also discussed our findings with the Ontario Palliative Care Network (OPCN), which is housed within Ontario Health, and works towards improving palliative care across Ontario. OPCN works directly with the government to implement change. We also hoped that by publishing in Healthy Debate, we might get the attention of relevant policymakers that read this publication. I am also currently working on a grant that will propose to design and test an intervention to improve the experience of these transitions. My hope is that, if found successful, we could scale that intervention more broadly across the province. Writing these out here, it seems like it’s not enough, and as researchers, we are always striving to find ways to make our research relevant, applicable, and a catalyst for change.
In terms of what you can do as caregivers, I have a few suggestions, but I will also ask a few colleagues and get back to you. You could write to your local MPP to advocate for the changes we need to see in transitions-from-hospital-to-home at end of life. Namely we need better support for the LHINs to orchestrate these transitions and also need more training for health care providers. You could also reach out to executives at your local hospitals to see what initiatives they have underway to improve care transitions. There are also caregiver advocacy organizations that you could get involved with like the Ontario Caregiver organization (https://ontariocaregiver.ca/) or Carers Canada (https://www.carerscanada.ca/priorities/anadian-caregiver-strategy/).
I’d be happy to have a more robust conversation with you about this. Feel free to contact me at sarina.isenberg@sinaihealth.ca. We are also always looking for patients and caregivers to be involved with our work as advocates informing what we do and collaborating with us. One of my coauthors on this piece, Maya Stern, is a patient advocate involved with the project.
Thank you Sarina. Your information on how your work is distributed, to whom and how it is acted upon is much appreciated as are your suggestions as to whom to contact re improving this aspect of care.
Thank you also for inviting me to contact you for a more robust conversation. I will be in touch, shortly.
Best regards – Denyse
Thanks Denyse! Looking forward to hearing from you!