Opinion

Raising the bar on our haphazard end-of-life transition from hospital to home

5 Comments
  • Cynthia Johnston says:

    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.

  • Denyse Lynch says:

    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.

    • Sarina Isenberg says:

      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.

      • Denyse Lynch says:

        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

      • Sarina Isenberg says:

        Thanks Denyse! Looking forward to hearing from you!

Authors

Sarina R. Isenberg

Contributor

Sarina R. Isenberg, PhD, is a Scientist at the Temmy Latner Centre for Palliative Care at Sinai Health and an Assistant Professor in the Department of Family and Community Medicine at the University of Toronto.

Stephanie Saunders

Contributor

Stephanie Saunders is a Research Coordinator at the Temmy Latner Centre for Palliative Care (Sinai Health System). Her background is in exercise psychology, exploring physical activity behaviours in adults with chronic disease.

Maya Stern

Contributor

Maya Stern is a Patient Advisor with 30 years of lived experience in the Canadian healthcare system. She has a Master of Public Health and works at Camp Quality Canada running a program to aid in the transition of childhood cancer survivors into adulthood.

Ramona Mahtani

Contributor

Ramona Mahtani is a Palliative Care Physician and Assistant Professor with the Department of Family and Community Medicine at the University of Toronto. She is also the Site Lead for the Palliative Care Consultation team at Mount Sinai Hospital with the Temmy Latner Centre for Palliative Care.

Republish this article

Republish this article on your website under the creative commons licence.

Learn more