These are select resources I’ve come across in my research and over the course of working on Now Recharging, and found them worth sharing.
- This is not intended to be a comprehensive list in any way (there are so many excellent works out there!), nor a formal endorsement.
- I’m not a medical professional, so please bear that in mind when reading my summaries and thoughts.
- Where possible, a book has been linked to its page at the Toronto Public Library (TPL), my amazing local library system. It should have all the information if you need to look it up. Support your local libraries and bookstores!
Quick links: Palliative care / Talking about death / Caregiver resources / Advanced care planning (making your end-of-life wishes known)
- Now Recharging – What is palliative care? intro/educational comic (version for printing)
Still frequently thought of as “end-of-life care”, palliative care focuses treating the whole person, especially in areas of pain management. Currently, modern medicine focuses heavily on cures, often resulting in extreme pain or discomfort. A growing movement is focused on bringing palliative care into other areas of care.
- World Health Organization – Definition of palliative care
- Canadian Virtual Hospice – Online articles, forums, guides to other resources
- GetPalliativeCare.org – Centre to Advance Palliative Care (US-based)
- Palliative care improves quality of life, but patients link it with death
- PalliMed.org – Hospice and palliative medicine blog
- 2018 // Effectiveness of palliative care services: A population-based study of end-of-life care for cancer patients – Patients who received palliative care experienced significantly lower rates of all indicators of aggressive care such as hospital admission, emergency department visits, intensive care unit stays, major operating room procedures, and lower in-hospital death.
- 2016 // Randomized trial of early integrated palliative and oncology care – Early palliative care improved quality of life, mood, coping, and the frequency of end-of-life discussions in patients with newly diagnosed lung and gastrointestinal cancer.
- 2015 // Enhancing Palliative Care in Nursing Practice – Projects exploring opportunities to support greater use of palliative care in every care setting.
Talking about death
- Dying Matters: England and Wales-based group aiming to help people talk more openly about death, bereavement, and planning for end of life
- The Dying Well Collective – spaces for conversations on dying, death and grief
- The d-word : talking about dying: a guide for relatives, friends and carers by Sue Brayne
- A Mortician’s Tale by Laundry Bear – gentle, lovely indie game
- Talking about death won’t kill you by Dr. Kathy Kortes-Miller – guide for essential end-of-life conversations, including family, children, workplaces, healthcare providers and social media considerations
- Caring Bridge – free and secure platform to create a single place to update friends and family during difficult times
- The Complete Bedside Companion: A No-Nonsense Guide to Caring for the Seriously Ill – Extremely detailed and comprehensive US-focused book
- Hospice Toronto resources – including a complete PDF of A Caregiver’s Guide – A Handbook about End-of-Life Care
- Handbook for Mortals (free online)
- LotsaHelpingHands.com – free service to set up secure list of activities for supporters to view/signup for, and post updates to support network