Hospice Quinte: Changing Lives Podcast

Navigating the Hospice Palliative Care System

February 28, 2022 Hospice Quinte
Hospice Quinte: Changing Lives Podcast
Navigating the Hospice Palliative Care System
Show Notes Transcript

As a new caregiver, or even a caregiver of many years, navigating the system in hospice palliative care can be hard to do.  Knowing how to navigate the path will not only help you to understand the services available and how to access them but will also help you advocate for the person you are caring for.  Find out how to navigate the hospice palliative care system in this week's Changing Lives podcast.

Listen on 91x FM
You can listen to episodes of "Changing Lives"  on 91x FM each Monday (except for holidays) at 9:05am.  Hospice Quinte is grateful to the support that 91x FM provides in producing the "Changing Lives" podcast.

About Hospice Quinte
Hospice Quinte provides individuals, their families, and caregivers with compassionate end of life care, by attending to their physical, psychosocial, and practical needs, and offering empathetic care to those who are grieving through visiting hospice services and support groups.  All Hospice Quinte programs and services are provided by compassionate, well-trained volunteers and staff at no charge to the individual or their family.  

Hospice Quinte serves a population of over 102,000 in Quinte West, Belleville, Deseronto, Tyendinaga Township and the Tyendinaga Mohawk Territory. To find out more visit HospiceQuinte.ca.

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As a new caregiver, or even a caregiver of many years, navigating the system in hospice palliative care can be a scary and daunting proposition.  While there is a lot of emotion, stress, fear and grief in end-of-life care, the healthcare system brings its own complications and obstacles.

There are two main things to keep in mind when navigating the health care system.  Those are the types of care providers, and communications with care providers.  There are many components to the healthcare team that support an individual who has received a diagnosis of a palliative illness.  Knowing how to navigate the path will not only help you to understand the services available and how to access them but will also help you advocate for the person you are caring for.  It is important to remember that your voice is the one that communicates to the care team what your loved one is experiencing when they are not able to do so for themselves.   

Communication with your care recipient’s team of healthcare providers is crucial.  In order to communicate effectively, it is important to identify yourself as the caregiver upfront to the healthcare team.  This ensures that providers know who to share information with and that they may ask for information from you.  If it is not clearly explained, you’ll need to ask about what to expect regarding your loved one’s condition, its anticipated trajectory and what to expect in terms of your caregiving role.   

Here are four questions to consider asking when you interact with healthcare providers, no matter their role.  What is the main concern today, what needs to be done next, why is it important to do this, and who do I contact if I have further questions?  As the caregiver, you will likely be responsible for cross-provider communication and for providing the continuity of information from one healthcare provider to the next.  

The caregiving role might include being your care recipient’s advocate, and you may need to speak on their behalf and become persistent in asking for the services they require and are entitled to.  Some time ago, Ontario healthcare changed their focus from hospital-centered care to community-centered care.  When a person has been diagnosed with an illness which has the capacity to end their life, they will be followed by a team of community care providers that work together to ensure the best possible outcomes for the individual’s care.  

The end-of-life journey most likely begins with a doctor’s diagnosis, whether this be at a general practitioner’s office, in a hospital setting or by a family health team.  From there, if assistance is required at home, a referral to Home and Community Care is sometimes automatically done by the treating physician.  If a referral is not made on your loved one’s behalf, it might be up to you to call and make the referral directly.  Be prepared with as much information as you can.  It can help care teams make appropriate decisions and expedite the help entitled to you.  From there, Home and Community Care can coordinate care partners such as nurses, personal support workers, occupational therapists, physiotherapists, social workers, palliative care physicians, nurse practitioners, oxygen therapies, and caregiver respite.  

At Hospice Quinte, we provide palliative clients with a trained volunteer who will spend approximately four hours per week visiting the individual, allowing the caregiver to take a break.  The advantage of Hospice Quinte’s Visiting Volunteer Program is that the same volunteer will visit each week, so there is continuity for the patient and for the family in knowing who it is that will be coming.   Also, this service is always free of charge.

A critical part of navigating the system for end-of-life care is keeping detailed records, whether that is keeping all appointment dates written down and organized, medication lists with up-to-date instructions, records about changes in your loved one’s routines, changes in symptoms, or questions regarding next steps.  Being prepared will help ease frustration and give you more opportunity to spend quality time with your loved one.  

It is important for you to know that as difficult as your role as caregiver may be, there is help and support available to you.  You are not expected to know all the answers, nor are you expected to do the job without help.  The staff and volunteers at Hospice Quinte want to help support you and your loved one along the journey.

Hospice Quinte provides individuals, their families, and caregivers with compassionate end of life care, by attending to their physical, psychosocial, and practical needs, and offering empathetic care to those who are grieving through visiting hospice services and support groups.  All Hospice Quinte programs and services are provided by compassionate, well-trained volunteers and staff at no charge to the individual or their family.  We serve a population of over 102,000 in Quinte West, Belleville, Deseronto, Tyendinaga Township and the Tyendinaga Mohawk Territory.