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Supporting the families of patients in the ICU

The intensive care unit (ICU) is a high-pressure environment, but taking care of the patient isn’t what is most challenging for many critical care nurses. Surprisingly, it is taking care of the emotional wellbeing of the patient’s loved ones that can be most difficult.

ICU Nurse Zara Lord said anxiety, depression and even post-traumatic stress syndrome occurs in ICU families, but the signs can go unnoticed because the focus is on the critically ill.

“I just spent a 12-hour shift glued to the bedside of a critically unwell young person.

“The day had its highs and lows, but as the patient slipped into delirium towards the end of my shift, the patient’s parent exhibited all the typical signs of anxiety.

“As ICU nurses, we don’t just nurse the patient, but the family as well, particularly in these situations,” said Ms Lord.
Delivering information with compassion and caution is vital to supporting families in the ICU, explained Ms Lord.

“When providing information, be cautious not to overwhelm the family member by gauging how much each individual wants to know and divert  attention away from things that may be troubling for them.”

The use of patient journals, successful in many international hospitals, is being piloted in Australian hospitals and could be instrumental in supporting ICU families. 

“The journal stays in the room with the patient for the duration of their stay, and we encourage family members to jot down information about what the patient likes - such as music and hobbies.

“More importantly, family members are encouraged to journal about things that happen each day, such as scans, improvements, deteriorations, funny moments, sad moments and anything they would like to reflect on.”

This refection is helpful for families to process the situation at hand but is also beneficial for patient recovery to fill in time gaps.

It’s also important to engage family members as active carers, explained Ms Lord, which can involve combing hair, talking to their loved one and hand-holding.

“When a patient is not going to survive an illness, we help families to preserve tangible memories of their loved ones with handprints, locks of hair and photographs,” said Ms Lord.

Senior ICU Nurse Lyn Hopper said rapport building with families and working collaboratively with colleagues is key to ensuring a consistent and caring environment in the ICU.

“It’s important to work as a team and to give the same message to families.

“Participate in family conferences and medical rounds, so all messages to families are clear and consistent.

“Nurses also need to make use of allied health services that can support families, such as religious personnel, social workers and volunteers.

“When patients are critically ill, death does occur, and families need to be prepared early for this outcome.

“The worst deaths are when nurses are unable to build rapport with families,” said Ms Hopper. 

Unfortunately, when ICU families don’t receive adequate support, they can experience increased distress at an already traumatic time.

Loreena Walsh believes the behaviour of ICU nurses caring for her critically ill father created further trauma for her family.

“When we were given a 24-hour deadline that life support would be terminated, a nurse said: ''Oh, I'm so glad I don't have to pretend anymore.'

“Being told she'd been tired of pretending and keeping up appearance was a heartbreak I'll never forget,” said Ms Walsh.

Inclusiveness in the treatment process was also what made Ms Walsh and her family feel supported.

“The nurses that explained the process and told us what to look for in case Dad's breathing tubes slipped were helpful, but not those who kept us in the dark or treated us as though we couldn't be there."

Unfortunately, when termination of life support took place, Ms Walsh said there was no emotional support offered.

"Today, I'm sure I suffer mentally because of our decision as there was no follow up or assistance.

“We simply walked out, left Dad behind, and it was done.

“I believe where long-term ICU visits and end-of-life are experienced there should be a counsellor on board before the termination of life,” said Ms Walsh.


Tips on supporting the families of patients in ICU

Former ICU Nurse Willow Ramsey, now an End of Life Doula, said nursing the patient is relatively straight-forward compared to the task of supporting family members of the critically ill. 

Ms Ramsey offers the following advice to ICU Nurses:

Explain what you are doing and why
The majority of equipment and routine in ICU is unfamiliar to most people. So, explanations can reduce the level of anxiety in family members and help them to put things into perspective.

Be approachable and accessible
Open the door to questions and conversation. If you’re unable to answer a question asked by a family member, find someone who can. This brings a greater level of respect over saying, ''I don't know’.

If you’re unable to speak with them in the moment, arrange a time to talk and stick to it.  Forgetting or letting it slide loses their respect.

Involve the family members in appropriate personal care
Family members have often said they feel useless standing or sitting by the bedside. Involving them in simple tasks like applying moisturiser or doing passive exercises (if clinically appropriate and safe for the patient) provides relatives with a feeling of usefulness.

It's an opportunity for them to see just how unwell their family member is and aids in the acceptance of the possibility of death.

Meet them where they are at
Explain the situation in terms that they can understand. If you’re unsure, ask the family what they understand of the situation to obtain a starting point and an idea of how much detail they can handle.

Be honest while being compassionate
Don’t fill them with false hope. If the situation is grim with a likely poor outcome, that’s what they need to hear.

Families I have worked with appreciate honesty while delivering the news compassionately.  They are grateful and can begin preparing for what is about to happen.

Be authentic
Just because we deal with this every day doesn't mean we need to appear hard and cold or without emotion. If a particular case tugs at your heartstrings, it's ok to shed a tear. We are human, and families like to see the softer side of us too.

Be an advocate for their family member
At times family members can be quite strong in what they wish for their relative. They may want extraordinary measures to be taken when the patient’s quality of life is already poor.

Stand up for your patient and ask their relative if this is really what their loved one would want if they were able to speak for themselves.

Likewise, if you think the treating team is pushing too hard, speak up and remind them there is a human being under all the machinery.

Families look to nursing staff to be the voice they feel they don’t have in these situations.

Show them where they can take time out in a quiet space, get a drink or use the restroom
Providing access to tea or coffee making facilities and a restroom is invaluable to families. Being able to freshen up after a long day of difficult conversations can make a huge difference.

Encourage them to go home to rest/sleep/eat
Families sometimes need to be persuaded to take rest. They worry about things happening while they are gone.

Remind them that death or “a turn for the worst” can generally be predicted by monitoring equipment and that you will call them if anything changes.

Also, when the patient returns home, they will need a lot of assistance.  So, remind them that they need to start preparing while experts look after their loved one in the meantime.

Facilitate requests as best you can within policies and guidelines
I have had strange requests from family members and have always done my best to accommodate where it will not impact on the safety of the patient or other patients and staff.

Where it has a potential impact on others, I have always provided an alternative, aiming for win-win where everyone is happy.

“These tips are a great way to earn respect and trust of your patients and their family.

“It will help you support them in ways they didn’t know they needed,” said Ms Ramsey.

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Haley Williams

Haley Williams has a Bachelor of Communication in Journalism and over a decade of experience in the media, marketing and communications industries.

She is a widely published journalist with a particular interest in writing magazine features on parenting, health, fitness, nutrition and education.

Before becoming a freelance journalist, Haley worked as a writer for NeoLife (a worldwide nutrition company), News Limited and APN News & Media.

Haley also has extensive experience as an SEO Content Writer and Digital Marketing Strategist.