Hospice workers Clarice Chung, Andrea Lawrence, Ed Boswell-Correa and Genevieve Simati all feel privileged in the work they do and have learned many lessons about life, death and love.
Four hospice workers explain what their work has taught them about life, death and love, and what palliative care is really like for both patients and families.
Each year, hospice services throughout New Zealand provide palliative care to more than 10,000 people who die. But those who work in the industry would like Kiwis to know that there’s more to their work than death.
“There is a stigma that hospice is a service that supports the dying,” says Clarice Chung, a palliative care physiotherapist. “But it also helps a person to live well, despite a terminal illness.”
Clinical nurse specialist Andrea Lawrence agrees. “Our biggest focus is on helping people to live the best lives they can and promoting living well.”
Hospice services can range from nursing to physiotherapy to social work to cultural liaison, and much more, and the support is not only for the person with a terminal illness but also for their loved ones.
“I find it an absolute privilege to support patients and their families through this part of their journey,” says Genevieve Simati, a hospice Pacific cultural liaison. “I don’t take for granted the families who allow us into their space in this often challenging time.”
Simati began working in hospice care after witnessing the palliative care her husband, mother and sister received.
“Death can often lead to different life choices,” she says. “For me, it led me to hospice. Everything I do for hospice is in memory of my husband, my mother, and my sister who were all supported by Tōtara Hospice.”
Working in end-of-life care of course comes with its challenges, but it also provides many lessons about what’s important in life and how we’ll feel when confronted with a terminal illness.
“No one has ever regretted being too loving, too caring, too nurturing,” says Ed Boswell-Correa, a clinical nurse specialist. “But plenty of people have regretted not being enough of those things.”
In this edited Q&A, Boswell-Correa, Simati, Chung and Lawrence explain what hospice care is like for patients, families and staff, and what their career experiences have taught them about the most important things in life.
Ed has been a nurse for eight years and has worked in hospice care as a clinical nurse specialist for the last year, both in NZ and the United States.
What are the most challenging aspects of your role?
For the majority of our clients, their first day of service with us will be their healthiest day with us. Bearing witness to a person as they approach death and providing support to them and their family is the most challenging aspect.
What made you want to work in hospice care?
To help people with one of the most trying moments of their life.
What is a typical day like for you?
A day in the community starts by organising my schedule to determine which clients I will see at their homes or call on the phone. Before leaving for the day our team meets for a multidisciplinary team meeting to discuss how our day looks and any clients with complex needs. I then take one of the company’s electric vehicles and head into the community to meet my clients in their homes. At the end of the day, I return to the office to discuss any possible changes to a client’s care plan and what may need to be done to continue to meet their care needs.
How do you deal with the stress and heartache that comes with the job?
Mindfulness meditation and exercise. Ensuring that I make the most of my time every day.
What are the most rewarding parts of your job?
Being allowed to serve as a psychopomp, that is to help guide and provide answers to our clients about what end-of-life care and death will look like in practice. To provide them and their family with support as they go through the process.
Why are hospices so important?
Only death and taxes are certain; hospice helps to demystify and guide a person through one of those. Hospices help to ensure people pass on with dignity and grace.
If someone has a loved one or family member in hospice care, what’s the one thing you’d like them to know?
Many times, I have found families that are concerned that their loved one, who is at the end of life, seems focused on small things or distracted. Crossing the final threshold is something we all must do, yet none of us are prepared for. It’s okay for your loved one to fret over small details and trifles. They understand what is going on, and they are coming to it on their own terms.
What are the most important lessons you’ve learned through your work about life, death and love?
You never get time back. However time is spent, it stays spent. Be mindful and purposeful with how you while away your hours.
Death can be dignified and graceful.
In the end, the only thing that stays with the dying is the love of those around them, and this is usually a reflection of the love the dying gave them. No one has ever regretted being too loving, too caring, too nurturing. But plenty of people have regretted not being enough of those things.
Genevieve is a Pacific cultural liaison, supporting Pacific patients under the care of Tōtara Hospice in Auckland.
What made you want to work in hospice care?
Tōtara Hospice provided wonderful care for my husband, and I wanted to do the same for others.
What is a typical day like for you?
Visiting patients in the community and our inpatient unit, listening to them and assessing their needs, providing education on our services, and offering cultural support.
What are the most challenging aspects of your role?
That I can be talking with a patient today and organising some support for them and they pass away the next day.
How do you deal with the stress and heartache that must come with the job?
My faith helps me deal with heartache and gives me hope. And being in nature or gardening helps me a lot.
What are the most rewarding parts of your job?
This role is very fulfilling and meaningful. I find it an absolute privilege to support patients and their families through this part of their journey. I don’t take for granted the families who allow us into their space in this often challenging time.
What’s your most memorable moment from your career so far?
After taking a patient on a tour of our hospice, hearing him say, “Everything I was told about hospice is a lie, this is not just a place to come and die, this place will help me live well until I die.”
If someone has a loved one or family member in hospice care, what’s the one thing you’d like them to know?
Allow us to walk alongside you and help you navigate this part of your journey. People have a lot of opinions about hospice but come and see for yourself.
What are the most important lessons you’ve learned through your work about love?
Love doesn’t end just because your person dies, we make room for it in our new reality. And their death can often lead to different life choices; for me, it led me to hospice. Everything I do for hospice is in memory of my husband, my mother, and my sister who were all supported by Tōtara Hospice.
Andrea is a clinical nurse specialist for Poi (Palliative Outreach Initiative) and ARRC (Aged Residential Care) and has worked at Tōtara Hospice in Auckland for more than six years. She works alongside GPs and ARRC facilities to provide education, coaching and specialist palliative care reviews of patients.
What are the most challenging aspects of your role?
Overcoming the myths and taboos associated with hospice, death and dying. Many people believe that coming to Tōtara Hospice or being on a palliative pathway is about dying, but our biggest focus is on helping people to live the best lives they can and promoting living well. Many people are still nervous talking about and preparing for death, but once the topic has been opened many people have numerous questions and want to know what to expect or how to live well.
How do you deal with the stress and heartache that come with the job?
It’s a privilege and honour to be invited into people’s lives, whānau and homes to walk alongside them during their palliative pathway. Many share their life stories and enter into a trust that few people get to experience. I treasure these shared moments and make sure that I live my own life to the full in their memory so that I too can share these moments with a palliative nurse in the future when I walk my own palliative journey.
What are the most rewarding parts of your job?
Like birth, people remember their loved one’s death. It is incredibly important in my role to ensure that a person experiences death how and where they want it and that a family are supported and prepared as best as possible, because the memories will live with them forever. The life stories that people share and being part of people’s lives at such a precious time is incredibly rewarding, and to walk that journey with them is a privilege.
Why are hospices so important?
Hospice provides an incredibly important service at a time when patients and their whānau are at their most vulnerable and need the skill of a team that is not afraid to approach the taboo topic of death. We guide both the patient and their whānau on their last journey.
If someone has a loved one or family member in hospice care, what’s the one thing you’d like them to know?
Many people remain scared of hospice, but I would encourage them to come along and visit their local hospice, where they can experience the wairua and see that hospice promotes living well.
What are the most important lessons you’ve learned through your work about life, death and love?
Life is precious and you never know what is around the corner. Live life to the full and live it now. I have learnt not to be scared of death and to be brave and question my own beliefs. And that love should be unconditional. Love breaks all barriers. Love lasts forever.
Clarice is the manager for Allied Health, a service comprising physiotherapists, occupational therapists, counsellors, cultural support, spiritual support, pharmacy and social workers. They ensure patients have access to comprehensive and holistic care that includes physical, psychological, spiritual, and emotional expertise. She is also a palliative care physiotherapist, working with people who have a life-limiting or life-threatening illness, with less than 1 year to live. “We all have important things to do in our lives, people with an illness are no different,” Chung says. “We help patients to obtain strength and confidence to partake in day-to-day living and support a better quality of life.”
What are the most challenging aspects of your role?
As hard as it is to work with patients who have a limited time to live, what challenges me, is seeing how patients and their families need to remain resourceful and diligent because of limited and hard-to-access resources to make ends meet. Our patients and families deserve better. This is why I have chosen to progress my career into a managerial role, I hope to contribute to future healthcare strategies.
What made you want to work in hospice care?
I wanted to practice my physiotherapy skills in a different way. The palliative care philosophy of showing compassion and building relationships with others, during what might be the most challenging time of a person’s life journey felt like an important and fulfilling role for me.
What is a typical day like for you?
Patients receiving hospice care can present as either being relatively well or stable in their disease, or they could have significant physical or psychological challenges if their illness progresses. Every patient is different and may require a different approach. A typical day is a whole lot of listening and adapting my practice to what the person in front of me requires. Our work is predominantly carried out in people’s homes, and our service includes providing support to immediate families. Physiotherapists share tips with carers on how to move their loved ones safely in bed or around the home. We also have a small gym onsite at the hospice; patients who would like to and are able to become more active enjoy this one-on-one time to build their confidence to move again.
From a hospice leadership perspective, we have a culture of collegiality and innovation. So a typical day could have various activities like being part of multi-disciplinary case discussions, supporting colleagues with organisational commitments, and adding to ways to improve our front-line service.
How do you deal with the stress and heartache that comes with the job?
In life, I think that there are many things that we do not have control over. And this role has taught me to remain grounded in my own values of respect and compassion for all people. What is also helpful is having good colleagues around you. It takes a whole team who have trust and respect for each other to do good work.
What are the most rewarding parts of your job?
I have met numerous families who show kindness and resilience when times are tumultuously tough. My job is an opportunity to help others in what could be a stressful time. It is amazing how good care from family, friends and health professionals makes a difference in a person’s health journey.
What’s your most memorable moment from your career so far?
People who come to us have been given a life span of approximately less than one year to live. For some, physical activity can be challenging. A few memorable moments were simple but meaningful gestures like when we helped a bedridden father gain the strength to embrace his children in a standing position. Or when despite the odds of disease, a bunch of women faced their fears and tried paddle boarding for the first time with us. Memorable moments were when our patients felt empowered to do what mattered most to them.
Why are hospices so important?
Hospice philosophies support a person whose illness may not be curable and the focus is on comfort and quality of life. Though there is a stigma that hospice is a service that supports the dying, it is also a service that helps a person to live well, despite a terminal illness.
Terminally ill people have a lot to contribute, and hospice services keep the patient’s interests and goals at the forefront. Our specialised expertise helps the patient and their families to navigate barriers and help to find resilience to help them keep doing what is important.
What are the most important lessons you’ve learned through your work about life, death and love?
Planning for death or having challenging conversations about death does not make it happen sooner. The load on families is easier when a person fills out an advanced care plan.
Death is 100 per cent guaranteed for all of us. We don’t have to wait for a serious health diagnosis to appreciate the gift of life. Life is better with great friends and family, who remain with you regardless of your circumstances. Simple acts of kindness and gentleness go a long way.
Hospice Awareness Week runs from May 13-19. For more information, see hospice.org.nz
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