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Palliative care is everyone’s concern

A focus on palliative care across residents, family and aged-care organisations is fast becoming a necessity. By Kevin Rocks

For many people, discussing the possibility of placing a family member in aged care can be difficult and even distressing. And palliative care is seen as a taboo topic, too uncomfortable or frightening for many families to have an open and honest discussion about.

Unfortunately, with 38 per cent of residents entering aged care for less than a year, and 27 per cent of those residents requiring less than six months of care, many families cannot avoid these important conversations.

The challenge for many aged-care organisations is to open up channels for communication on this difficult topic, and re-set community thinking.

Palliative care is often misunderstood to be a process for managing the end of life. In reality, it is about providing an active and positive support system to enhance the quality of life for any person experiencing life-threatening illness, including ageing-related illness and dementia. Most importantly, however, palliative care recognises that the wishes and preferences of each resident and their family are different.

A whole-of-organisation approach to communicating the real meaning of palliative care is necessary from day one, empowering residents of all ages –regardless of their care requirements – their families and staff to have these essential conversations.

Starting the conversation

Providing good care starts with understanding the individual needs of each resident. In our organisation, care starts with meeting the advanced care planning team.

The advanced care planning meeting is the time when residents and their families are asked to share their preferences regarding end-of-life care. Often residents and family members enter this conversation unprepared and even unwilling to discuss their wishes. But an early discussion allows the team to explain the aspects of care involved, helping residents and their families make informed choices.

Not only does this process help remove the anxiety associated with not knowing what a loved one’s wishes are, but also, residents, their families and carers are able to talk through the plan for as long as needed to ensure everyone understands.

This discussion is captured in a formal legal document that must be signed in the presence of a witness, giving residents and their families the comfort that their choices will be respected.

We review the advanced care plan annually, but the resident can change it at any time.

Palliative care champions

To continue the conversation about palliative care options, our organisation recently hosted an open forum for staff and doctors to discuss best practice.

Participants identified a disconnect between residents, families, staff and doctors as to how treatment options, next steps and support were communicated.

Consequently, Holy Family Services made the decision to introduce a dedicated team member to champion best practice in palliative care. Sister Alicia, an RN and a member of our congregation who is qualified in palliative and pastoral care, has been appointed to this vital role.

Sister Alicia’s role will ensure a single point of contact is available for staff, doctors, families and residents. She will explain information and recommendations from doctors to the care teams, advise residents, their families and carers in a way that is informative and easy to understand, and provide comfort and guidance during stressful times.

In the past, if a resident was taken to the hospital for end-of-life care, they typically remained there. However, advanced care planning discussions and ongoing liaisons between families and medical staff have resulted in more residents choosing to return to Holy Family Services so they can be with their family and friends, where they are confident in their choices and care.

This sentiment is echoed by family members, who often choose to commemorate their family member by holding the funeral at Holy Family Services’ heritage church, bringing together their loved one’s family with the community of staff and residents who were their friends and carers.

Culture from boardroom to kitchen    

Regardless of the time they spend at our facility, each resident becomes a valued part of our community and family.

Everyone from the nurses and care staff through to the hotel services staff bonds with the residents, but providing care to those near the end of life can be particularly emotional and stressful.

All staff – from the boardroom to the kitchen – get the opportunity to learn about palliative care and treatment options, and to understand the choices residents and their families may make.

This approach helps staff understand what care plans are in place and how to communicate these decisions to other staff members, families, visitors and even other residents.

Along with the advanced care plan, each new staff member’s induction should include a session on pastoral care and support options.

For example, all at Holy Family Services are introduced to the mission statement of ‘hospitality, love and acceptance’ and how these values form the cornerstone of the organisation’s culture:

  • Hospitality is the foundation of Holy Family Services’ legacy and values; it creates a physical environment suitable to the needs of those entrusted in our care
  • Love is an essential value to be reflected in our industry and allows us to relate to one another with compassion and empathy, recognising that no two people are the same
  • Acceptance is demonstrated by the fact that although Holy Family Services is an iconic institution for the Australian-Polish community, our doors have always been open to people from all nations, cultures and religions.

These values are represented at every level of the organisation, meaning palliative care is positioned as yet another aspect of fulfilling these promises to residents.

Ultimately, the induction process should ensure all staff members understand options available to residents and to staff themselves; such as 24/7 pastoral care services or access to senior care staff and counsellors if they have any questions, concerns or challenges.

Caring for the carers

Holy Family Services aims to provide care in a community environment. We want our residents, their families or carers, and staff to know they are supported along the palliative care journey.

This community spirit changes attitudes towards one of the most important conversations a person can have. We believe it eases the strain of one of life’s most daunting challenges by reminding families that their loved one will be remembered.

Memorial services are held for each resident, which are attended by staff, volunteers, friends, family and community members. The resident’s life story, photographs and experiences are noted in a special Memory Book.

Notices are posted for the staff when a resident passes, to remind them that their care is not only recognised, but also appreciated and valued. These notices also detail the services available should carers require additional support.

In addition to immediate memorial services, each year a service is held on All Saint’s Day, where those who have passed are remembered. Family members often attend these services for years after their loss; many also send through letters of thanks to their loved one’s carers, or share happy experiences.

Ultimately, caring for those who need it most is the essence of our industry. As providers, we have the responsibility to remember just how important the work of our carers is. We must make sure we have the right measures in place to empower our staff to provide the highest quality care, whilst ensuring they are comfortable, capable and supported.

Kevin Rocks is chief executive of Holy Family Services.

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