Kelly’s Blog Post #3
Howdy, and thanks for joining me again.
Statistically studies suggest around 80% of Australians report that they would prefer to die at home or in a hospice setting in the care of loved ones. In reality, around only 18% do. Of Little Haven patients, over 60% die at home, with over 90% dying in their place of choice. This outcome of the Little Haven Model of Care, is certainly supported by early admission to our service.
Little Haven accepts referrals for patients with terminal diagnosis at any stage of their disease progression, including those receiving active treatment, such as chemotherapy or radiation. We frequently witness the deflating moment when a patient has been told their chemotherapy treatment is no longer working, the treatment on which they had pinned so much hope, and they are discharged from the oncology service. They won’t see their oncologist again. They won’t see their chemo nurses again. Their cardiologist. Haematologist. Renal Specialist. Whoever. All the people that they have seen regularly, sometimes for years, gone from their life. But we’re still there. A clinical presence, a comfort.
A Palliative Care Doctor and a team of Palliative Care Nurses, that continue to monitor their disease progression and changing needs. Suggesting and implementing interventions that may ease the patients journey through what remains of their life. Prescribing and adjusting medication regimes. A team, that continues to “Do” when the patient has been told “I’m sorry, there’s nothing more we can do” … We know our presence and support is a vast comfort to patients and their loved ones, when that little flicker of hope is extinguished and there are no bullets left in the clip to fire at the demon disease as it gains hold on their body.
In our living years it seems we plan for so many things. We plan and manage our lives around anticipated events such as leaving school, career moves, beginning a family, retirement, holidays, what we’ll have for dinner Friday night…. but Death? Oh, we’ll cross that bridge when we come to it, hey?
Well, imagine the worst and it’s here. Whether by way of advanced age, or a terminal disease diagnosis, I’m running out of time. My capacity to self-care is packing its bags. My ability to move about the community and tend to matters of home and hearth, will soon no longer be within my gift. Oh dear… where will I be? Who will be with me? Who will I leave behind? How will I live while I’m dying? Will I have pain? Breathlessness? I’m scared. How do I do this…? – That’s palliative care.
A significant obstacle to Quality of Life can be the phase of deterioration when a person starts to need assistance with hygiene and self-care. If I had a dollar for every time a patient has said “when I get to the point that I can’t wipe me own bum, I’m out of here”. In reality there can often be quite a lengthy period towards the end of days that can be rich in joy and comfort…. but you might need a hand in the shower or to go to the loo. As undignified as that may appear to a person in full working order, most times a gentle dialogue conducted at the right time can see the individual shift, from feelings of humiliation and even failure, to feelings of gratitude and even pride that the right people have been identified and inducted into this very intimate role of caring for them. That’s palliative care.
When outside support services are needed, the application and approval process and then the assigning of funded in home support, is a minefield. For people already overwhelmed by what’s happening and what may lay ahead, the chore of dealing with online applications and interviews with service providers, is simply too much and they may decide to just struggle on unassisted instead. This type of support occupies a large part of our Social Workers involvement with patient care. Often we may need to liaise with service providers, to help them to streamline their care to better meet the patients’ needs. This is also Palliative Care.
Palliative Care is Holistic Care
Let me tell you a story that illustrates how a holistic view of a patient’s mind, body, and soul can positively impact their end-of-life story. We had a patient with advanced end-stage renal failure, an elderly Hindu man. He has appropriate medications in place for pain management, nausea, and fluid retention. He’s also on a reasonably high-dose steroid to improve his appetite and reduce inflammation in his body. The appropriate regimen is to take these medications early in the day to avoid exacerbation of symptoms, such as pain and nausea, and to prevent sleeplessness at night, with frequent toileting and wakefulness due to the diuretic and the steroid.
But what our nurses frequently find on our daily visits is the gentleman still in bed in the middle of the day, in pain and nauseous, having not taken any of his morning medications. Why not? A little bit of surreptitious investigation via a private conversation with the gentleman’s granddaughter reveals why the fellow won’t take his medications in a timely manner as advised. “He won’t,” she says, “He can’t. First, he must be clean. It’s Hindu culture.”
Oh, I see. Unlike myself, who can frequently be found schlepping around in my jimjams at midday, quaffing orange juice and munching on Doritos while I scroll through Facebook (nothing wrong with that), this gentleman and millions like him engage in a morning ritual of cleansing and prayer before they face the activities of the day. He’s not likely to abandon a lifetime habit of spiritual recognition at this point in his life, is he? He’s about to join this pantheon of gods who have accompanied, guided, and comforted him throughout his 80-odd years of existence, and he’s not going to drop the ball now.
He has a care service that provides daily hygiene visits, but they attend anytime between 9 a.m. and 1 p.m. A few emails and collegial discussions with his service provider, and once they were convinced of their responsibility to recognize this cultural need of their consumer, they agreed to provide his hygiene visits between 7:30 and 8:30 a.m. Situation resolved!
The gentleman was infinitely more comfortable, with symptoms managed for comfort and cultural considerations identified and incorporated into his care plan. This too is palliative care.
Another little story. The tragedy of a young Mother with an infant daughter and young son. She is diagnosed with terminal cancer and is facing the inevitability of her imminent death. Her husband will be a single Dad. She will not be here to share in her children’s milestone moments. 16th birthdays. High school graduations. Transitions to adulthood. And everything in between. By the time this beautiful woman stepped through the veil and her family faced life without her, with support and encouragement from her Palliative Care team she had compiled a swath of letters and gifts to be presented to her children and her husband at key moments in the future that will ensure her memory is honoured and must have been an enormous comfort to her as she was dying. This is called Legacy Work and This is also Palliative care.
Identifying and providing the clinical and practical needs of a dying person is only a part of Palliative Care. Only by seeing the whole person and where they sit within their family and community group can we hope to construct a space in which that person and their loved ones will experience a good death.
It takes a village…
‘Till next time. Later Peeps. x
Kelly King (c) 2024
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