This year’s National Palliative Care Week, from May 20 to 26, 2018, is inviting us to explore ‘What matters most?’ when it comes to palliative care.
To find out more, we chatted to two of Envigor’s Care Services Managers about their experiences working in palliative care, how they support people to live out their lives as comfortably as possible and what they’ve learned along the way.
A holistic approach
Cheryl Rowell, Envigor’s Care Services Manager at Seasons Bribie Island, says that delivering good palliative care is about taking a holistic approach that takes into consideration the person’s personal wishes while supporting both their family and the care staff delivering the care.
“For me, palliative care is looking after our residents until the end of life. It also involves looking after the family and also the staff to ensure that true care is exactly what the client gets until they die,” says Cheryl.
Bernadette Hatton, Envigor’s Care Services Manager at Seasons Mango Hill, agrees that supporting families through their loved one’s final stage of their life is a vital part of the role.
“It’s important we offer care and support for the families too, as well as looking after the client,” says Bernadette.
“Once their mother or father has died, that care and support is something they’ll always remember. It’s really important we give that client who is dying the dignity and respect that they deserve. And it’s just as important to make the family feel comfortable with what is happening with their loved ones.”
Planning ahead
Planning ahead for end of life is an important step that according to both Cheryl and Bernadette has the dual effect of empowering families as well as helping care staff coordinate and organise the care that is aligned with the client’s wishes.
“With Envigor clients we like to have the care discussions early, including discussions about end of life care and end of life decisions and how they would like things to run when we get to that time,” says Cheryl.
“I think doing it early in the piece takes away the burden and anxiety from the family when they really don’t know what mum and dad need. If that discussion is had early it takes away the anxiety for the client and the family.
“It’s a very emotional time, it’s a personal time and often families don’t know what choices to make as they’re so emotional at that time. It takes that pressure away.”
Bernadette says as well as helping the family, it also helps to ensure that the palliative care delivery runs as smoothly as possible.
“Having that conversation means we have the right things in place, even before we know this person is palliative. Do they want to be resuscitated at any stage during their palliation? Do they want a GP to be present? Do they need someone to sit with them for the full 24-hours? It’s coordinating all of that information and making sure that person is not left on their own if that’s what their wish is. Some clients prefer to be on their own and that’s fine. So, you have a discussion before you get to that stage if possible to see what their wishes are at the end stages of life. My job is to make sure what that client has asked for is what we do,” says Bernadette.
The power of good palliative care
When asked about palliative care stories that have impacted them, Bernadette and Cheryl both talk about times where they’ve taken a personal journey with a person and their family.
“It’s one on one. They are not a number, they are a person and they are a part of our family. They mean something to us,” says Bernadette.
“We had a lady that we’d looked after her for some years as she had dementia. Her progression was quite slow to start with. She came to the end stages where she was no longer mobile and she needed us to support her in every aspect, which was really quite sad as that’s not who she was as a person, she was a very, very strong lady. Her dignity had gone and what we had to try and do is let her keep her dignity as much as possible.”
“She was palliative for about a week and it was about encouraging her to keep doing what she needed to do and do that journey in her own way. Not interfering with what she wanted to do and just supporting her – just sitting with her and holding her hand. Her facial expressions showed she was grateful knowing someone was there.
“I’ll never forget her words before she did die, she turned around to us and said, ‘thank you and I’ll love you all for this’ and that really touched me because we’d given that woman the dignity that she had wanted and deserved. She had a very beautiful journey and it was very, very special.”
Cheryl says that every palliative journey is unique and special in its own way.
“I think they all impact on you. I think they are all very special. It’s a privilege to be with someone and to be involved in that whole process,” says Cheryl.
“Palliative care is a personal journey. It’s different for every person. I’ve learned it does certainly pay to have that personal planning in place as that dictates how things will run towards the end. It’s a privilege to have families look to you for the guidance and to have them want you to be involved in that care.”
Bernadette says that delivering palliative care has affected how she is planning for her own end of life care.
“It makes you look at the end of life completely differently. It makes you realise what you want. It makes you realise that you need to make decisions and be quite forthright about your decisions as you get older. I want what I give to people in all honesty. I want someone to support my family and know that my wishes are respected. I think that’s the most important thing.”