Below are lessons learned during my sister’s illness and death and my consequent engagement in hospice palliative care work locally and regionally. The suggestions are an ongoing work in progress. If you’d like some support or just to chat about being a caregiver, hospice palliative care or end of life, feel free to email me.
If you or your loved one has been diagnosed with a life limiting illness and they wish/plan to die at home, I recommend you:
– get in touch soonest with your local LHIN (ours is the SouthEast LHIN) and have a Home and Community Care Coordinator assigned to you. Ask to have a Care Coordinator who is specialised in palliative care – someone who has experience.
– make sure you have a palliative care specialist – not only a curative care specialist – on your health care team – be it a nurse, a nurse practitioner and/or a physician – right from the start. In the SouthEast LHIN there is a Nurse Practitioner (NP), Michelle Foulkes, who is available and who I recommend you advocate to have on your care team as early as possible. If your doctor is one of the few that are interested (and experienced) in palliative care and end of life, then you do not necessarily need the NP. Otherwise, ask your primary care provider or Care Coordinator for a referral and get her on your team.
– make sure you are given a phone number to a palliative care doctor, nurse, NP that you can call any time 24/7. This is independent of Bayshore or Partners in Care. This is your Primary Care Provider – someone who is completely comfortable with palliative (and not only curative) care
– make sure you have a substitute decision maker (power of attorney) who you are absolutely comfortable with and can and will speak on your behalf (see the Caregiver and Resources page for Advance Care Planning guides).
– reflect on your wishes, write them down and communicate them with everyone in your circle of care (see resources below to help you do this); depending on your prognosis, you may want to focus primarily on your goals of care, if you can, discuss them with your loved ones (here’s a helpful on-line guide)
All the way along, try to get attention from healthcare professionals that are both skilled and comfortable in palliative care specifically. Be empowered to demand this care. It is your right. Do not be afraid to be a squeaky wheel. In dying and death, you do not have a chance to do it over. You will not regret being assertive during such an incredibly important and tender time in your and your loved one’s life. You are not being rude, you are looking after your loved one. Our healthcare system is amazing. It is also overburdened and it is therefore expected that you take charge of your own care.
Questions to ask the doctor. My questions for Akka’s doctor (primary care provider) to determine his experience, skills and approach to end of life.
Prepare the family, circle of care and organise the community for support. I used lotsahelping hands to organise our support system. It can take a village to die at home. this is being updated
A Caregiver’s Guide – A Handbook about End-of-life Care. Canadian Hospice Palliative Care Association. An incredibly thorough and helpful guide for caregivers. You may be able to pick up a hard copy at the Perth and Smiths Falls hospital by contacting their palliative care department or Lanark Community Home Support’s Coordinator Rebecca Bowie.
If you’d like some support or tips on navigating the system, or about being a caregiver to someone who would like to die at home, please feel free to email me. I will do my best to connect you with the resources or people that can help. You can have a look here for a wee bio of me and also Janet Douglass, one of the palliative care nurses that I consult with.
For other excellent and helpful resources on all aspects of caregiving, dying and death including who to contact for counseling, coaching, caregiver training and webinars, please see the Caregiver Support and Resource page.
Depending on where your loved one is at in their journey, you may want to participate in the Practical Caregiver Training that we offer – to help you along the process and prepare you as much as possible for end of life.