End-of-life wishes: think, talk, learn, plan, share.
Saturday, 27 July 2013 14:49

Dying at home: a return to the way it was.

There’s an explosion of home care needs coming.

With so many wanting to die at home, we need to know what to do as a healthcare team to support that journey through end of life and beyond: the family goes on although the patient is absent in a physical sense.”

Sue VanderBent, Executive Director of Ontario Home Care Association (left) along with Jackie Redmond Chief Executive Officer South East CCAC (Community Care Access Centre) (right) are co-chairs of the Quality and Value in Home Care (QVHC) steering committee. Their mission: to understand how to achieve the best possible outcomes in home care – right through to life’s end.

Jackie: “The core of being at home is that it enables autonomous decision. 'I choose to have a dog, to eat what and when, to bathe when I want.' In home care, we need to take into account what the patient and family are able to do, willing to do and capable of doing."

Sue points out: “We want to keep people as functional as possible at home right through the end. Even though they maybe are deathly ill, there are ways to stay at home. In the context of end of life and palliative care, the outcome in home care is that we want to help plan for as ‘good a death’ as possible at home – So we need to know ‘What does a good death mean to you?

For a family, it can be frightening when a crisis happens:

Jackie: “It can be mapped out in a deliberate way, for example: minimizing breathing issues and anxiety in last few hours of life. If they understand and are prepared for every ‘next step’ – what is going to happen and how – means they may not need to call an ambulance which will put into motion the hospitalization process.”

Working in Home Care is very different than working in an institution

 Sue: Working with patients and families in their home requires a collaborative approach and an assessment of surroundings: ‘Where can I hang that IV bag? Are there safety issues? How can I teach this person and/or their family what they need to manage?' ”

Nira Rittenberg an Occupational Therapist, on home care:

Sometimes education helps ‘out of the box’ thinking: to run with the situation. Sometimes education is ‘capacity building’ teaching new skills, giving new tools for coping. I often reinforce that there is no one right answer, and sometimes there is nothing else they can do or that can be done. Hearing this can be a comfort.” Read more

Natrice Rese, a retired Personal Support Worker gives perspective on the kind of intimacy and involvement offered by home care:

'Remembering details is an important part of the job.  When you remember how to fix their pillow, how high to turn the heat, how much of the curtain needs to be pulled in the afternoon sun, their favorite sweater or pair of slippers, all of these things add to the quality of the client’s day. It feels good to be able to help others: there is nothing like getting a thank you from your client – a hug, a smile, a warm handshake. Their appreciation comes in many forms. Read more

Jackie:  "With a care team that the patient has known, individual needs would be addressed and the family would be part of the team. Home care workers must be attentive to the physical and emotional needs. It’s a unique time in family's life. Flexibility is needed – for example, often a family needs to go into Hospice for a couple of days or a week for a temporary rest or break."

Jackie and Sue both have a background in Social Work and know that in home care:

"There are specific questions that should and could be tackled before being faced with the task: 'Who is going to come pronounce dead? Who is going to get the body?' We need to make sure it's all taken into account.”

THE QVHC mandate:

Building on a collective intention, our shared vision is a client centred system that provides high quality, value added, responsible home and community care for the people of Ontario now and in the future.

This should be a model for home healthcare, and I sure hope it happens in my lifetime.

©Kathy Kastner

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