i have a life-threatening illness
You just got the news and it’s not good. Your illness is terminal. Who can you turn to, what do you need, it can all be so overwhelming. We are here to support you through this difficult time.
At The Hospice Hub, we are dedicated to providing care, comfort and compassion during the most challenging moments. Let us be your support system and together we can make a difference.
We provide services, including the expertise of a Registered Nurse (RN), which will help answer your questions and guide you to resources and community services and supports. We have specially trained volunteers that offer emotional support, companionship, caregiver respite and practical help in your home or your place of residence.
Self-referrals to The Hospice Hub are welcome, as are referrals made by your family, caregiver, doctor, or team members of other services supporting you.
where to start...
If you or someone you love, or care for, has been diagnosed with a life-threatening illness, here are some suggestions to help you begin navigating the journey with support:
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Contact your local Home and Community Care Support Services (HCCSS) and request to have a Home and Community Care Coordinator assigned to you. The area that The Hospice Hub serves is also served by the HCCSS of Lanark, Leeds & Grenville. It is strongly recommended that you ask for a Care Coordinator who is specialized and has experience in palliative care.
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Aim to get a palliative care specialist – not only a curative care specialist (e.g. an oncologist) – on your health care team right from the start – be it a nurse, a nurse practitioner and/or a physician. Do not be afraid to ask if your doctor has experience in palliative care, and if they say no or seem uncomfortable discussing this with you, ask them for a referral to someone in your area who has experience, or ask the Home and Community Care Coordinator for a referral.
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Ask for a phone number and permission from your palliative care specialist for you, or your caregiver, to be able to call them any time, 24 hours a day / 7 days a week, when needed. It is important this person is comfortable with palliative care, not only curative care, as they will be able to support you in what you need day-to-day as your experience changes. Note: this palliative care specialist is independent of Bayshore or Partners in Care.
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Reach out to Palliative Care Services at the Perth and Smiths Falls District Hospital. You can seek support services, and also access the Advance Care Planning Guide, and the Palliative Care Booklet on their website.
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Identify your Substitute Decision Maker, this is the person or people who are legally allowed to make healthcare decisions for you if you are not capable of making the decision yourself. Everyone in Ontario automatically has one as established in the Health Care Consent Act. It is important to figure out who the law identifies as your SDM, and if you are not comfortable with this person, or they are not comfortable and willing to speak on your behalf, and willing to honour your wishes, you may identify an Attorney for Personal Care instead.
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Reflect on your wishes, write them down and communicate them with everyone in your circle of care. Depending on your prognosis, you may want to focus primarily on your goals of care, and if you can, discuss them with your loved ones. Helpful tips for you in having these conversations can be found at the Advanced Care Planning Ontario website.
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 yourself or 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.
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