As an end-of-life-care nurse practitioner, Jeanette Lacey often meets patients just hours before they die in hospital. She explains just how much she can do for patients and their families in that limited time.

As an end-of-life nurse practitioner, what patients are you working with?

I work at John Hunter Hospital in Newcastle, NSW, supporting people who are expected to die during their hospital admission. Sometimes I only meet people three or four hours before they die. The longest time I’ve had with a patient is three weeks, but the average life expectancy of the people I meet is 48 hours.

Most people I see have end-stage chronic diseases, such as respiratory or cardiac disease, but I also see frail elderly people who may have had a fall and deteriorated after that. I rarely see patients with cancer.

The majority of my patients have never seen specialist palliative care services. When patients have, however, I try to ensure the palliative care services are aware of the hospital admission so they can continue providing support.

How do you support people you’ve only just met at such a traumatic time?

I can build rapport with a family in 10 minutes by being present, listening and providing information to support them. Being present with people is a really important part of what I do.

When I walk into a patient’s room the first thing I do is try to get a sense of what is happening, both with the patient who of course is my priority, but also in terms of family dynamics. I need to work out if there is anger or sadness in the room and how I can work with that. When there is anger, disappointment or dissatisfaction, it generally has stemmed from a communication issue. Purely by listening you can fix a lot of those problems.

I’ve always loved trying to make what is awful situation just a little bit better by providing good communication and the best possible end-of-life care that I can deliver.

I learned a lot about communication in my previous roles, working as a nurse in an intensive care unit (ICU) and as an organ and tissue donation specialist nurse. When someone becomes unwell suddenly and unexpectedly, which is the majority of ICU patients, the crisis for their family of potentially losing a loved one is incredibly difficult. In that environment I learned the importance of honest, clear communication; trying not to remove hope and trying not to give false hope. That whole philosophy of hoping for the best but preparing for the worst is really lovely. No one hopes that someone is going to die, but going to ICU means the potential is there.

I also prescribe and administer medication, so I work to ensure patients are not in pain and manage their other symptoms. I also do end-of-life care planning which includes psycho-social support to address the spiritual and cultural needs of patient and family. I rely on a team of social workers, pastoral care staff, physios and occupational therapists who have worked with the patient on the ward to support me.

Last year I worked to secure funding from NSW Health to fund a telehealth project, which enabled patients to see and talk to family and friends online if they couldn’t visit to say goodbye. We’ve used it when patients have had loved ones who wanted to fly to see them from Europe, but are not been sure whether the patient would die before they arrived. Using webcams, speakers and the hospital Wi-Fi, patients have been able to spend as long as they need talking face-to-face.

How did you end up with this career focus?

Before working as a donation specialist nurse and in ICU I worked in operating theatres with deceased patients who were coming in for organ retrieval surgery. I was really aware that there were no family members involved at that stage and I remember thinking ‘There must be a lot more to this than what I’m seeing’. I was interested that the process of opting for organ and tissue donation often helps families to make sense of an awful situation and I became fascinated with how we, as health professionals, could support families.

Working with families of people who had died suddenly and unexpectedly became a passion for me. I wanted to make sure they received honest and useful communication and support that assisted them on what was probably the worst day of their lives.

How much of a challenge is that for the health profession?

I think learning to sit comfortably with death and dying is a real challenge for everyone, including lots of health professionals.

However, it is important, because there is evidence that if we can communicate and be honest with people about death and dying we can decrease long-term complex grief.  It is very difficult to provide that sort of support if we don’t recognise dying until three hours before the death occurs. In those instances, death has probably been getting closer for some time without the patient or family realising.

As health professionals, we need to be able to communicate effectively what is happening. We need to accept when we can’t cure but recognise that we can always make this traumatic time better for the family, through care, palliating symptoms, listening and giving our time. We cannot prevent death and the sadness that comes with it but we can be kind and compassionate at all times.

What have you learned about human nature and how we approach the end of life?

In my experience, about 85% of ICU patients who had chronic and complex health conditions had never considered that they might be terminal in nature. Often it was only when they came into intensive care with an acute exacerbation that they discovered it wasn’t reversible. That’s when many were told for the first time dying was a potential outcome.

I think in our society we have a death-denying culture of not wanting to talk about death and dying and expecting that medical doctors will fix all health problems. Many people cannot understand that there isn’t a fix-all for death and that we are all going to die.

That is challenging for medical staff in hospitals, who are often working to get people with chronic and complex illnesses well enough to go home. Those people working in the palliative and end-of-life sphere have tools to help recognise when someone might be in their last year of life and getting sicker. I think we need to improve awareness of these tools among other health professionals. 

Ultimately, I think patients and their families don’t want to feel abandoned. They want to feel care, compassion, and be well supported by their health care team. They want to know that the staff caring for their loved one are doing the best possible job they can to ensure that the person is safe, their pain and symptoms are well managed, and that their loved one’s dignity is respected and maintained. 

For others considering a similar career path, what study and training have you done?

I have a master of nursing clinical practice and I’ve done multiple communication and bereavement counselling courses.

Last year I studied a specialist certificate in palliative care at the University of Melbourne. This was very beneficial in reinforcing my learnings and experience in this space.  The first part of the year was about improving communication about breaking bad news and understanding what that bad news might mean to someone. For me the highlight was doing role-plays with professional actors. You’d break some kind of bad news to them. Then there would be a period of reflection and discussion about the use of your verbal and non-verbal communication. The actors would tell you how it made them feel, and perhaps give hints on how to change your style.

We also covered the history of palliative care and policies and government strategies that guide practice in Australia, which is really important for the profession of palliative care into the future. The second part of the year was very much focused on the management of adult palliative care patients; assessment and management of pain, symptom control, and also a focus on patients in the palliative care in the non-cancer context which was very relevant to me.  

A variety of people did the course; very experienced palliative care nurses, and medical trainees, a psychologist, emergency department doctors, intensive and emergency nurses. It was wonderful to hear from people working from different places around the country and overseas, and the different ways people manage, especially when access to palliative care services and multidisciplinary teams is difficult.  It was a really worthwhile course. I would recommend it.