Palliative care nursing – the holistic approach to end of life

We teamed up with SA Health to interview some of their nurses, starting off with Palliative Care Nurse Suzie Beinke! This article is filled with some great gems of knowledge so I encourage you to read and share till the end!

Enjoying The Nurse Break’s free content? – please consider helping us cover some costs by shouting us a coffee/tip below.

Introduction

How long have you been nursing?

I started as a fresh-faced 17-year-old in November 1983. Non-stop nursing since then, so a total of 39 years! The only way to become a Registered Nurse in those days was by ‘In-hospital training’. The School of Nursing was in the hospital grounds at The Queen Elizabeth Hospital in Woodville. No University degrees were around then!

Where do you come from?

I was born in 1965 in Cleve, South Australia (a small town on the Eyre Peninsula). My family lived there for six years, then we moved to Windsor Gardens and then on to Henley Beach. I have now lived in One Tree Hill for over 20 years and have most of my family close by.

What are 2 fun facts about yourself?

1. I have two Harley Davidson motorbikes and have ridden bikes since I was 21 years old. I love riding with my husband, son, one of my brothers and a few friends

2. I have a daughter (Kate) who is 30 and an RN, a son (Tom) who is 29 (and his wife Cat is an RN) and one step-son. I have eight grandchildren and one on the way. I think I am a fun person, Mum and Grandma (sometimes!)

Palliative Care

How long have you worked in Palliative Care?

I have worked in Palliative Care for almost 21 years now. I work for Northern Adelaide Palliative Service (under NALHN) in the Community setting and also in the Lyell McEwin Hospital Consult Liaison role.

How did you get into palliative care nursing?

For my first few years of nursing, I worked in many different areas and wards including:  Emergency Department, Theatre, Mental Health Unit, Cardiac, Renal, orthopaedics, medical and surgical wards. I noticed in about 1985 that I found it very rewarding caring for someone at the end of their life.

I thought “If I can make the smallest difference in a positive way to a patient or their family at such an emotional and sometimes traumatic time, then I have done something worthwhile for someone”. Then in 1987 my Mum was diagnosed with metastatic breast cancer (she was 51 years old at the time).

It was such a shock to us all but Mum was so positive in her outlook and kept living life to the full until she sadly died in 1994. At that stage, Mum and Dad were living in the Barossa Valley and she was referred to palliative care, but the concept of palliative care at that time was in its infant stages in Australia at that time therefore there were minimal resources.

After Mum died, I felt I could try and make some difference for people nearing the end of life so began my career in palliative care formally in 2001. I completed a Graduate Diploma in Palliative Care in 2010 through Flinders University.

What type of patients do you care for?

In palliative care we care for people who have been diagnosed with a life limiting (non-curable) illness whether it is advanced cancer, end stage kidney, heart or respiratory failure. There are many other conditions that may shorten someone’s life and may affect someone at any age. Most of our patients are over 18 and some are even over 100.

We help support patients and their families/carers with a holistic approach including care of their physical, psychosocial and spiritual needs. This means ensuring someone’s pain, nausea, shortness of breath, distress or any other symptom that may be experiencing is as well controlled as possible.

We provide support and counselling and refer on to other services if someone needs some ‘hands on help” as in assistance with showering, medication administration or if they need any equipment.

We liaise with other care providers such as their GP, Oncologist or other specialist. I am currently working in community palliative care so visit patients in their homes (which is great as you see them in their own environment – different to seeing them in a blue gown in a hospital bed!), we are in their space and their lives.

Myths or common misconceptions about palliative care nursing?

People always ask “How do you deal with death and dying every day? How do you cope emotionally?” I respond with “This is what I love to do!” Palliative Care is not all doom and gloom, people are still living until they die, they are not “hanging around waiting to die”.

Some people who are faced with their own mortality say that it is such a special time, where families and friends reconnect, broken relationships are mended, special memories are made, and there is the opportunity to say things to people that they may have held back. People go on short holidays, visit places they have always wanted to see. 

I explain to others that empathy for others is such an important attribute, by being there supporting patients and their families, helping make their last months, weeks and days the best they can be. Forming a therapeutic relationship is key.  You cannot get emotionally involved as you would be a blubbering mess and wouldn’t be any help to anyone!

There are always going to be very sad stories and cases, people that remind you of someone you know, maybe someone that you do actually know, young ones saying goodbye to their children, the elderly man who has been married to the love of his life for 70 years and there has just been the two of them.  

The positives of your clinical area?

I am so lucky and fortunate to be a part of a close and supportive team. We are all very different (personality-wise) but we all have the same passion in caring for people and their families at the end of their lives. Being in the community part of our service, we are able to utilise our skills and experience, work autonomously but also being part of the team. We get to manage our own caseload of patients.

I feel privileged to be able to care for my patients and their families. To hear their stories, about what they love to do, what is important to them now, what work they did. We have only ever met them when they were unwell, so knowing that they were once young and healthy, living life to the fullest and seeing photos of them from before can be so heart-warming yet often tinged with sadness. 

The challenges of your clinical area?

I think the main challenge is (as with most areas in nursing) is that we would love more staff and external resources in the community to enable patients to stay at home for end-of-life care. Patients and their families need (and deserve) access to services such as medical speciality input, nursing, allied health (physiotherapy, occupational therapy, social work, spiritual care, dietician, complementary therapist) to receive holistic care at the end of life.

The work can be challenging, busy and overwhelming at times sometimes, but I feel so well supported by my colleagues, and the satisfaction and positive feedback from families and patients makes everything worthwhile.

You also need to have a good sense of humour!

What do you envision for 10 years from now for pall care nursing?

That is an interesting question and I don’t have a clear answer! Palliative Care has evolved so much in the 20 years that I worked in this area. When I first started working in the community service of palliative care, I was one of three nurses, now we have approximately 18 nurses! I would hope that community resources are increased, that all doctors, nurses, allied health are all provided with ongoing education on caring for someone at the end of their life, it should be part of everyone’s core business.

 If all clinicians have the skill, knowledge and support from the specialist palliative care service, then we can focus on patients and families with complex physical, spiritual, and psychosocial issues. I would also love to see more palliative care inpatient units.

Tips and Advice

Tips for nurses on the topic of death and dying:

1. The first death you witness will be overwhelming, emotional and maybe scary (depending on the circumstances around their death), but don’t be afraid to reach out for support

2. I use the words “death” and “dying”. I do not say “passing” or “gone to sleep”, I am truthful in wording

3. Be respectful when you are attending to their last rites (laying their body out, washing them etc). It is the last thing you will do for this person.

Tips for nurses on difficult conversations:

1. Do not ever say “I know how you feel”

2. Just being there is often enough, you don’t always have to be talking

3. If someone asks me if they are dying, I will always respond with “Do you think you are dying?” (in a compassionate way of course!), most people will say “I think I am” and I will gently respond, I think you are right. They may then ask “How long do you think I have got”. Again, I turn the question back to them and ask “what’s your gut feeling” and they will often be spot on! I reassure them that whatever time they have left, we will do our best to ensure your symptoms are well controlled and help in any way we can”

Tips for students or a grad in palliative care?

I would say that communication is the most important skill in our role. The way we connect, listen, deliver news, converse and explain things is paramount to how our patients and families feel. I would encourage student nurses to observe us initially to see how we communicate. But to encourage them to also engage in the conversation where and when appropriate. 

To always know about your patients: what is their social situation? Who are their supports? What is their medical condition? What treatment are they having? Are there cultural needs to be aware of? And if you don’t know, look it up. I feel that patients and their families appreciate and feel like they are being treated as an individual if you know their story.

A very important tip I also give is to never identify a patient by their disease (ie. He’s a lung cancer who lives with his wife), always say “Mr …… who has lung cancer”.

Your daughter is a nurse at the same hospital and so is your daughter in law!

Yes, I am very proud that my daughter Kate (interview coming soon…) and daughter-in-law Cat (interview coming soon….) are Nurses, and fabulous ones at that! Both started their careers in the Lyell McEwin Hospital Emergency Department where they met and soon became friends. It was Kate who introduced Cat to her brother Tom, and now they are married with a gorgeous two-year-old daughter and another due in a couple of weeks.

Kate is also married with a beautiful four-month-old baby boy. Kate is on Maternity Leave but will return to the ED as a Nurse Consultant next year and Cat has moved into Safety and Quality as a Quality Consultant. I had always encouraged Kate to become a nurse explaining that it is a wonderful career with so many different areas to work in and so many opportunities. I think most staff at LMH think we are sisters! Kate used to say to me “someone came up to me today and said’ oh, you have to be a Beinke!’”

Kate and I are both on the ‘End of Life Improvement Group’ and ‘Dying in the ED’ Working group helping develop care plans for all clinicians to be able to care for someone at the end of life (in the last hours or days) whether they are in the LMH, Modbury Hospital or the Emergency Departments.

Kate, Cat and I all helped promote ‘Advance Care Planning Week’ in 2021, something we are very passionate about (and I am sure I will rope them in to help again this year!)

Why do you love working at LMH and why should others consider it as an employer?

I started at the LMH in 2001 when it was still affiliated with the Queen Elizabeth Hospital (North Western Adelaide Health Service). I had been at TQEH since I started nursing in 1983 (although I did have a few years off working elsewhere) and did love it there but when we moved to One Tree Hill it was a long commute to work each day.

When I began at LMH, I felt so at home as soon as I started there, I loved the staff, the feel of the hospital and the way they cared for people so well. It was quite a bit smaller then, a bit like a country hospital! I have seen the redevelopments and the expansions of old and new services and am now so proud of where it is today, a “State of the Art Hospital”, busy but still has a local community feel to it. For new staff there are so many opportunities and different areas to work in.

I feel proud to be a nurse in NALHN! I have been an inpatient there a few times and see specialists there on a regular basis, so I know what it is like to be on both sides (although I much prefer to be a nurse!).

I feel blessed that I chose this career path, have met so many lifelong friends, have a wonderful supportive family, so yes I am a lucky girl!