This week is Hospice Awareness Week, where across the country Hospices are helping the community understand the full range of the service provided to patients. The hospice movement was founded Cicely Saunders who famously quoted “you matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.” The modern hospice movement began in the late 1950s, based on the idea that terminally ill patients needed compassionate care, in addition to the management of physical symptoms. It looked at a person’s psychological, spiritual and physical wellness and the family’s needs, rather than just treating physical symptoms.
“So many families and individuals have described nurses as ‘angels’ to me” says fundraising Manager Anna Hughes. “That’s a pretty big compliment, even though it sounds funny when they are your colleagues! But the reason I think so many people say that is, during the hardest time in their life, their whole experience is impacted when someone is unconditionally kind, caring, and compassionate. Coming in with all their specialist knowledge and skills but making time to listen, empower, support and treat them as the very important human beings that they are is the core of Hospice.”
“Ko Mataatua te waka
Ko Ohinemataroa te awa
Ko Urukaraka te Maunga
Ko Ngat-Tawhaki me Ngati-Rongo nga Hapu
Ko Tuhoe Te Iwi
Ko Anna Nikora-Foley Toku Ingoa”
Anna Nikora-Foley, one of the specialist palliative care nurses at Hospice Eastern Bay of Plenty, started nursing at 43 and began her work with Nurse Maude in Christchurch. Since then, she worked in Oncology, Haematology, worked overseas with blood cancers and stem cell transplants, before finally returning home 5 years ago to work again in Palliative care at Hospice EBOP where she recently completed a postgraduate diploma in advanced nursing with a focus in palliative care.
Anna explains it’s really common in the community for people not to know what the hospice service is about, and ongoing education for both Māori and Pākehā is important. “Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness. This isn’t just cancer, it can cover other long term diagnoses such as renal failure and cardiac issues, end stage COPD among a few. We help with the prevention and relief of suffering through early identification and impeccable assessment and treatment of pain and other problems. The care we provide is reflected by Mason Durie’s Te Whare Tapa Wha model (the four-sided house) and encompasses physical, psychological, social and spiritual needs of the patient and their whanau.”
“There’s no “typical” day in palliative care, as patients’ needs can change so quickly so you need to be adaptable. Usually we start in the day with a clinical nursing handover and patient list of 4-5 patients to visit for the day, but this can change very frequently depending on needs.” Mrs Foley describes what one of her days might look like (note these are typical visits, and not based on specific patients to protect privacy):
“The first person I see is a man with pancreatic cancer. His pain has spiraled out of control so I help him bring it to a manageable standard so he could get out of bed and do what he needed for the day. I provide education on how to manage his pain, reassurance and help with his fatigue. Then it’s time to sit down and reassure the whanau about the fantastic job they are doing, so that once his symptoms are managed they can get back to life again. Dying is taking one step at a time. During this process there are respite periods where you can continue to life your life.
Next I go to see a gentleman who lives alone and managed really well, but is no longer able to cope on his own and needed to be admitted to funded palliative beds for symptom management. I’m working in partnership with the hospice social worker to have him admitted and work with the clinical team at Golden pond, working with medication changes that need to be done, and helping with practical needs. If a patient starts having difficulty swallowing, we may need to proceed with a subcut pump (a pump that dispenses medication under the skin) if the patient wants it.
Next I visit a patient whose breathing has become more problematic. We organise oxygen, which is a long process and organised through district nursing. It can take up to half a day which feels like a long time when you’re having trouble breathing, so it’s important we make it happen quickly. I then work with the patient on good breathing techniques to make it easier for them. Then we talk about what can help. This patient was apprehensive about morphine which can be a very good intervention for managing breathing problems associated with cancer. Many patients think morphine is “the end of the road”, maybe through past experiences with family and have a fear of this, but that’s often based on myths. It’s a matter of educating about doses, how it works and Hospice is on call 24/7 for advice. We support patients to make their own decisions about their treatment by giving them all the options so they have the knowledge to make an informed choice.
At the end of the day I get a phone call from family about a patient with kidney failure whose condition has deteriorated – symptoms are getting a lot worse and they can’t take medication orally anymore. They have asked to go to the next stage of pain management which is a subcut pump mentioned earlier which helps with pain and agitation. I then need to reschedule two of my planned visits because the patient is over an hour’s drive from our base and my visit will take a while. I need to ensure I have all the equipment and paperwork needed, so that we can give the patient the help that they need. This patient already has equipment in place that we have loaned them – including a bed that was delivered last week by one of our volunteers. On arrival, I meet with the family, discuss the medication, how it will work, and set up the pump for the patient’s medication. I set up the pump but extra doses will be administered by the family, so I spend some time educating them on how to manage this and where to document it. A visit like this could take up to 4 hours once travel is factored in.
Hospice interventions are always done subcutaneously, not through IV. That means the medication goes under the skin not into a vein, so it is infuses slowly over 24 hours. Doing any extra doses themselves allows the family to have less intrusion on their time together and more autonomy, with the assurance we’re always a phone call away. I will visit every day to change the syringe driver medications, and monitor their needs.
It’s not just what we do that’s important, says Mrs Foley, but how. “I’m not sure whether people give much through into the inner systems of how their bodies work until things go awry. We are very complex on the inside, so managing something like pain can require a multidisciplinary approach, as pain is both a physical and psychological experience. Really listening to what’s going on with the patient is so important; you’d be surprised how many factors affect your pain levels.
Some of the patients come out through the medical ringer and are given a prognosis and referred to Hospice, but then when they come in to see us the focus changes. It’s no longer about your prognosis (how long you have to live), it’s about living your life until you die. We are so privileged to empower people through helping them manage their symptoms. We encourage the setting and achieving of goals, and continuing to maintain and love life to the best of their ability.
The best part of the job is meeting families and making the dying process a good memory. I have worked with patients from 12 years old to 97. Taking the fear out of death, the process of dying is a journey. To get a small window into the lives of these people that we are privileged to take care of, that’s the best part.
People often say to me that they didn’t want the Hospice service to come in because they weren’t ready to die. So it comes as a relief when they understand the Hospice service is also about specialist symptom management and enhancing quality of life to the best of our ability as a specialist nursing team so they can get on with the business of living. When we see families so relieved to have us there; that really is an honour.
Palliative nursing is a discipline that nurses are not always excited about and one of my goals is to encourage as many of the nursing studies coming through the hospice service to consider going into this field. It’s going to be much needed in the future, and is such a rewarding and important line of work. We need nurses who have an empathetic disposition, its’ more about listening actively than other nursing roles and you need to be very good at reading the unspoken needs of the patient and families. It’s a job that requires you to use your ears more than your mouth!
I quote James L Hallenbeck “if there is a sacred moment in the life-cycle other than a birth, it is a death and as with a birth, families will long remember, how a person died and how we helped or did not.” The hardest part of my job is seeing the sadness and loss, the gaps loved ones leave in their families when they die, and knowing that the road to recovery ahead for the family is not going to be easy. As a nurse it’s important to have self-care strategies in place, and focus on the good memories that we were a part of while caring for each and every unique patient and their whanau.”