Tag: aged care

95.

On 11 September 2024

“She’s 95.”

I know her age. I’ve seen her several times over the last few weeks – each time for something minor. Exacerbation of asthma. Mild cellulitis. Just last week I visited her to make sure a small leg wound was healing. I spent almost an hour with her, laughing and chatting. She told me she was going out to the club for lunch on Friday. She was really looking forward to her weekly outing. The only thing that troubled her was ‘that damn fluid pill’ – she refused to take it on Friday mornings because it interfered with her enjoyment of the visit to club. She just didn’t trust herself to get to the bathroom on time in a public place.

We joked about putting a catheter in just for Fridays, so she could still take her medicine and not interupt the lunch. She said it would be too obvious if she wore a skirt, so it probably wasn’t a good idea. We agreed that she could take the tablet when she returned, rather than with breakfast. There was definitely nothing wrong with her sense of humour.

“She’s 95.”

Today is different. This is not a minor problem.

Mild hip pain developed at the end of last week. Over the weekend it escalated, causing severe pain. One day she could walk independently with her wheelie walker and take herself to the bathroom. The next day she could not stand. Ambulance. Emergency Department. Attempt to scan. Too much pain, mission aborted, scan cancelled. Discharged.

“She’s 95.”

Yes, she has some chronic health problems, but if I hadn’t seen the evidence in writing on her medication chart, I would have guessed she was only in her mid 80s at best. Her mind is sharp. Her body is a little slower than she’d like, she gets breathless sometimes, but it doesn’t stop her from enjoying life. She participates in the activities. Goes out. Maintains some independence.

She describes the pain. Sharp, shooting, grabbing. It travels from her lower back through the buttock to the hip, then down the thigh to the leg. The slightest movement is excruciating. A quick neurological exam – she cannot move her toes. No reflexes in both legs or feet. Cannot feel painful stimuli. A very full bladder, and an inability to void.

She is frustrated, angry. Wants to know how this could suddenly occur, and whether it can be fixed. She doesn’t want to be bed-bound and dependent on others. Friday is only 4 days away, and she can’t miss going to the club.

Her GP and I agree that we really need a scan so that we know what we are dealing with, and how best to manage her pain. Putting a catheter in to empty her bladder and sending her back to the emergency department for investigations seems to be the best option to get the answers we need. The longer we delay, the higher the risk that she could have irreversible damage, which would hugely impact her quality of life. We agree that I will speak with the ED admitting doctor, and facilitate the transfer.

“She’s 95“.

The words seem to echo. They have been repeated over and over during the course of the conversation. I’ve done my best to present her case – starting with the history of the presenting condition, her background, usual level of functioning, my assessment findings, and the request for ED assessment and diagnostic imaging.

“She’s 95“, the ED physician keeps repeating.
“Nothing is reversible at her age. She’ll get a delirium. Sending her to hospital is cruel. She should just be kept comfortable. She’s not suitable for investigations. Not suitable for surgery. Not suitable for radiotherapy.”

Not suitable for….anything.

I’m struggling to stay calm and professional. She’s a good 95! Until four days ago, her quality of life was good. I am a strong advocate for avoiding hospital transfers if the risks outweigh the benefit, and as a palliative care nurse practitioner I have many years of experience ‘keeping people comfortable’. I politely and firmly continue to advocate for her. If it turns out to be a pathological fracture with cord compression, then perhaps radiotherapy would be the best form of pain relief. Age should not be a barrier to investigating this sudden acute problem.

“She’s 95.”

I have been firmly put in my place. Told not to call an ambulance and that the ED would not be accepting her. Told to liaise with her GP and keep her comfortable. Basically, I’ve been told that if you are 95, you don’t deserve to access health care in hospital. You don’t deserve answers. You don’t deserve treatment.

I am shocked to my core. I can barely speak. I am angry.
But why am I surprised?

Ageism in healthcare is not new. Elderly patients and carers say age discrimination in NSW hospitals is real and heartbreaking. Older people are made to feel that their healthcare is a waste of resources. In the recent world-wide pandemic, there has been abandonment and resultant deaths of older people in long term or aged care facilities, and ongoing debates about the ethicality of refusing care and life‐saving support to older individuals diagnosed with COVID‐19. Some hospital clinicians argued for a blanket policy that people from residential aged care facilities be denied access to emergency department transfers and hospital admissions to conserve resources for those younger and fitter and more likely to survive.

There is concern that the ageing population will put unsustainable pressure on public spending, with a focus on rising health costs and whether the health system will be able to serve the increasing numbers of older people needing care. A 2020 systematic review found that practitioners were apt to make clinical decisions that limited patients’ access to care based on patients’ age rather than their health needs, and demonstrates the pernicious reach of ageism. Ageism affects older people’s access to preventative and curative interventions – so much so that one Australian university now offers a short course which addresses pervasive ageism in the health and aged care sectors.

“She’s 95.”

My service is a”hospital avoidance” outreach service, and I do my best to prevent hospital admissions when it is appropriate and in the person’s best interest to do so – but this case is different. She isn’t dying – not even close. I ask myself the surprise questio n. While I wouldn’t be suprised if she died in the next 12 months, I would be suprised if she died in the next 6 months.

Whatever time she has left, it will be totally miserable if she is bed-bound due to paralysis and pain. She should still be entitled to access the health care and services she needs that are appropriate to her physical, mental, emotional and social needs and which contribute to her quality of life and general wellbeing (COTA).

After all, she’s only 95.

The rainbow secret

By Unravelled

On 22 May 2023

In Bedside stories

I hadn’t come to see her.

I was visiting another resident when the nurse asked me if I had time to review ‘the new lady’ who had been admitted the day before. I had a full day booked and was already running late, but the urgency in the nurse’s voice made me pause.

“What are you worried about?” I asked.

“She says she needs to go to the bathroom, but she won’t let us help her. She tried to get up to walk to the bathroom this morning, but collapsed back on to the bed. We think she needs to go to hospital but she doesn’t want us to call an ambulance.”

A week ago she had fallen at home, giving herself a fright. She had walked in to the care home the previous day for a short admission, hoping for a week or two of rest and to recover before returning home.

The look in her eyes as she gazed up at me when I entered the room stopped me in my tracks. I had never, in all my life, seen anything like it.

Fear, desperation, and something else that I could not name, all in one wide-eyed gaze. My heart sank. I took a deep breath, and asked for her permission to sit by the bed.

Her breathing was rapid and shallow. There was a sheen across her brow, the effort of trying to get enough air was taking it’s toll. Her skin was grey, her hands were cold, and her lips were blue. I held her hand and felt her pulse – so rapid and irregular I didn’t bother to count the rate. I sensed immediately that she was dying, and that the end would not be far away.

I suspected she had a full bladder that was causing discomfort. I lifted the bedclothes to examine her abdomen, and she panicked. I stopped.

She gripped my hand – hard. “Please…no…help…”, she said.

Her much younger sister sat on the other side of the room, looking worried and helpless. I asked her if she would mind giving us a few minutes alone. She left the room.

Her relief at being left alone with me was obvious. An immediate relaxation, slower breathing – but the fear in her eyes was still there.

She wanted to go to the bathroom, but could not walk. She did not want any assistance from me or from the staff. She declined to use a bed pan. She did not want help with toileting, or with personal care. At the mention of the possibility of a catheter, her fear escalated to something I had never seen before.

She definitely did not want a catheter. She was adamant that she did not want any medications to help with her breathing, anxiety and agitation.

I struggled to understand how to help this woman. I had run out of suggestions.

“What can I do to help you?”.

“Nothing…maybe…just…don’t know”, she said.

“How about I just listen, and you can tell me what is worrying you the most?”

I did not fully process what came next until after her death.

As she spoke while she struggled to breathe, I began to hear small pieces of her story – one so horrific that I could never have imagined it and one I will never forget.

A story of abuse, of trauma, and of rejection. A story of embarrassment, and guilt. A story of spiritual suffering. Of confusion. A fear of dying with an untold secret.

Her sentences were broken. The pieces of the puzzle came slowly, and made little sense at the time. The overwhelming theme was a person who had been the subject of decisions made by doctors, her parents and their church, which had caused untold physical and mental harm and incredible existential distress.

She told me of many hospital visits that included multiple surgeries. Her fear of catheters due to past attempts to insert them that had caused excrutiating pain. Of ‘cures’ and ‘punishments’ that had been imposed on her. She told me about her fear of taking any medicines that might take away her sense of control. She said it was all a secret. Even her sister did not know.

She talked about her faith, and her fear of doing something ‘against God’. She spoke of her guilt, said that she had ‘bad thoughts’ and that she was ‘not good enough’. She was so worried that she would die without forgiveness and was going to hell.

I assumed she had been sexually abused. I was right, and I was wrong.

After her death the last piece of the puzzle was discovered, and it all made sense.

She had been born with both male and female anatomy into a devoutly catholic family. The catholic church’s position is firm. One is born either or male or female, and this also applies to intersex people who have both male and female characteristics, and who are – in the eyes of the church – either biological boys or girls.

It has taken me many years to be able to reflect on this experience. My heart still breaks to think of a person so troubled and so imprisoned by a body that she felt did not belong to her. She had no sense of her own identity. No opportunity to explore her own sexuality.

She had lived a lifetime of being violated, stigmatized and tortured. A lifetime hiding in toilet cubicles in school and avoiding public change rooms so her friends would ‘not see’. A lifetime of not belonging. A lifetime of fear that her sister and others would find out. A lifetime of feeling lost, inadquate and helpless.

She was robbed of the chance to live life to the full, to be free and happy. To feel safe and secure. To love and be loved, to be intimate, and denied the opportunity to marry and have children.

My own sense of inadequacy, my frustration at being unable to manage her physical symptoms, my confusion about what I was seeing and hearing, and my struggle to make sense of it all, still play on my mind. I wonder if I could have done more, or something different.

She died a few hours later in the same way she had lived. Uncomfortably, restlessly, painfully.

But she died on her terms, having told her story and unburdened her heart.

She died having her experiences and feelings acknowledged and validated, being told that what she had endured was unfair and undeserved. She died being reassured that she was worthy, that she was not alone, and that she mattered.

It wasn’t ideal. It wasn’t what I would call a ‘good death’.

It was what it was.

Palliative care – it’s your right

By Unravelled

On 28 May 2022

In Reflections

As National Palliative Care Week draws to a close, many clinicians have been so busy providing palliative care in the current environment of strained services with increasing pressure, that we have not had a chance to reflect on or promote it.

One of the myths about palliative care is that it is only for end-of-life care, yet it is so much more than that.  Palliative care seeks to improve quality of life for anyone with a life threatening illness, through the relief of serious health-related suffering – physical, psychological, social, or spiritual. Everyone has a right to access high quality palliative care when and where they need it.

Palliative care has always been a passion for me, even as a student nurse more than twenty years ago. In my first week as a new graduate nurse my grandmother had a heart attack and was admitted to hospital. A week of tests and attempts to stabilise her was excruciating to watch. I knew she was dying, and advocated strongly for a palliative approach. One of my aunts admonished me for ‘being too pushy’, telling my parents it was not my place to have these discussions and that I should stop.

I knew my Nan well, and that she had talked to me about dying for many years. She had suffered excruciating chronic pain for decades after a car accident, and often said she would rather be dead than have to continue to live with it. I didn’t give up. As I sat with her in the last hours of her life, listening to her last breaths, I felt an immense relief that she was finally given the dignity of pain control through a syringe driver. I went home knowing she was finally getting the care she wanted and deserved. She died that night.

Two decades later I am working as a specialist palliative care nurse practitioner, caring for older people living in residential aged care. On a daily basis I find myself having to advocate for provision of palliative care in the face of a medical model that attempts to prolong life for as long as possible, even though the person is seriously ill, deteriorating and saying they are ready to die. I am constantly dismayed at the unwillingness of some doctors to have discussions about realistic goals and provide good primary palliative care.

Just this week, our team was called to see a lady who had been unwell for several days with a respiratory infection. She was unable to swallow medicines, eat or drink. She was restless and groaning, and her doctor had been unable to visit, although had charted oral antibiotics that morning. They were capsules that she was unable to swallow. She was rapidly deteriorating and was suffering, and the nurses and carers were concerned and anxious that they didn’t have appropriate medications prescribed to relieve her symptoms. Her advance care plan stated she wanted to have good symptom control and did not want to go to hospital.

I charted injectable medicines and planned to commence a syringe driver to prevent pain and suffering. When contacted, her doctor did not want it to be started because ‘she should be given a chance to wake up’, and wanted all the oral medications to remain on her chart so they could be given the next day. Her family were present, they stated they wanted her to be kept comfortable and that she had been in severe pain when carers repositioned her.

I prescribed a low dose morphine syringe driver knowing that it was my responsibility to ensure she didn’t suffer, and that it was her right to receive palliative care. Less than 24 hours later she died peacefully, her family by her side.

The World Health Organisation explicitly recognises palliative care under the human right to health, stating that it should be provided through person-centered and integrated health services that pay special attention to the specific needs and preferences of individual.

In my own jurisdiction the Medical Treatment (Health Directions) Act states that a person who has given a health direction that medical treatment be withdrawn or withheld “ has the right to receive relief from pain and suffering to the maximum extent that is reasonable in the circumstances. In providing relief from pain and suffering to the person, the health professional must give adequate consideration to the person’s account of the person’s level of pain and suffering”.

The Good medical practice code of conduct for doctors describes what is expected of all doctors registered to practice medicine in Australia, acknowledging the vital role they play in assisting the community to deal with the reality of death and its consequences. It outlines the following responsibilities:

“Taking steps to manage a patient’s symptoms and concerns in a manner consistent with their values and wishes.
Providing or arranging appropriate palliative care, including a multi-disciplinary approach whenever possible.
Understanding the limits of medicine in prolonging life and recognising when efforts to prolong life may not benefit the patient.
Understanding that you do not have a duty to try to prolong life at all cost. However, you have a duty to know when not to initiate and when to cease attempts at prolonging life, while ensuring that your patients receive appropriate relief from distress.”

Why then, is it all so difficult? Why do nurses and families have to continue to ‘push’ doctors to plan and ensure access to medicines for end of life care?

Many older people living in residential aged care recognise that they are in the last years or months of life. They have spoken with their families, and have made their wishes clear in an advance care plan. They put their trust in their general practitioner and the nurses in the facility to provide the care they need and expect to have their symptoms managed appropriately in their last days. They, or their family, should not be put in a position where they have to fight for this.

Palliative care is everyone’s business. Please choose a health professional for yourself and your loved ones who is open to talk about death and dying. Choose someone who respects your wishes, is willing to provide the medications needed for good symptom control, or who will refer to another provider if they don’t have the expertise required.

Choose a health provider who will embrace palliative care: it’s your right.

#NPCW2022

People, not numbers

By Unravelled

On 2 October 2021

In Reflections

18 months.

Watching. Waiting. Planning.

Dreading.

31st December 2019. The World Health Organisation picked up on a media statement by Wuhan Municipal Health Commission reporting cases of ‘viral pneumonia’ with unknown cause. On the 9th January 2020, it was determined that the cause was a ‘novel coronavirus’. The first death occured on 11th January 2020, four days later cases began emerging in other countries with evidence of human transmission.

On the 25th January 2020, the first cases were detected in Victoria and NSW in Australia. On 12 March 2020, just as we were starting to recover from devastating bushfires and hailstorms and having a family gathering to celebrate my daughter’s birthday, the ACT reported the first case of SARS-CoV-2, triggering a public health emergency and initial lockdown. COVID19 became a household word.

The news from overseas during the first wave was frightening. We heard about the increasing number of outbreaks and deaths in long term care homes – our equivalent of residential aged care. Italy’s death toll was one of the most tragic. Aged care homes (nursing homes) were described as ‘beseiged castles‘. In the province of Bergamo, more than 600 nursing home residents, from a total capacity of 6400 beds, died between March 7 and 27, 2020.

I read the Commonwealth ‘plan’ for preventing COVID19 in aged care. It wasn’t a plan, it was a thread-bare draft document of how to test and then begin to implement infection control precautions. It was woefully lacking in detail. Quite frankly, it sucked.

In March there was an outbreak at Dorothy Henderson Lodge in Sydney. Seventeen residents and five staff had COVID-19 and six residents died. In the ACT we started planning our own strategy to respond to outbreaks of COVID19 in residential aged care, not really knowing what we would be dealing with.

The first wave was quickly contained. The second wave was deadlier and more widespread. In mid 2020, we watched as Melbourne struggled to get control. I listened to the rising numbers of deaths of vulnerable elderly people, feeling helpless and sad for my colleagues on the front line. I helped audit the aged care facilities in Canberra for their readiness to respond to an outbreak. The whole time I was thinking to myself “We are SO not ready, I hope we never have to do this”.

I volunteered to be deployed to Victoria to help in aged care during the peak of the outbreak, but the ACT surge workforce was not requested. I secretly breathed a huge sigh of relief, at the same time feeling guilty about not being on the front line.

A total of 629 people died in residential aged care between the beginning of the pandemic in March and 19 September 2020. To most of Australia, they were numbers – statistics that were read out at daily press conferences. The Royal Commission into Aged Care Quality and Safety extended their work to conduct an investigation.

For the nation, it was a massive failure of the Commonwealth Government to prepare and respond in an area that was purely within their remit, not that of the states and territories. The Commonwealth Minister for Aged Care could not even tell a Senate Estimates Committee how many people had died. For the families of those people, this was a tragedy that was largely preventable. For those working in residential aged care it was a disaster that would cause significant trauma, burnout, and in some cases, end careers.

Totally surrounded by NSW, the ACT has always been under threat of a major COVID19 outbreak. Those of us working in healthcare have been like coiled springs: ready for action, hoping we would never have to face the stark reality, particularly in our disability and aged care homes.

We avoided the second wave, and the third.

This article outlines the chronology of COVID19 in Australia and the lessons learned in NSW. It now seems that the fourth wave has well and truly become the Tsunami threatening to demolish the whole east coast of Australia.

All this time, it feels like I have been holding my breath.

Eight days ago, my worst nightmare began to unfold, with the first positive cases in residential aged care in the ACT. Large numbers of staff were furloughed, outbreak disaster plans that had been 18 months in the making were implemented.

On Monday, three days after the outbreak, I received a frantic call asking me to see a rapidly deteriorating patient, and to supply as many ‘syringe drivers’ as I could. I knew at that point that it was going to be a bad week.

Navigating the infection control precautions to enter the facility, I walked past the ‘outbreak’ zone and headed to one of the ‘green zones’. I stopped to put on my PPE and then entered to see a resident who, although COVID negative, clearly needed end of life care. After doing my assessments and phoning several members of the family I wrote medication orders, documented my notes and started working on letters to support applications for family to travel into the ACT.

On Tuesday, I received my second emergency call to the facility. Another rapid deterioration, a resident who was COVID negative. More phone calls to distressed family members to break bad news, another infusion commenced for end of life care, and more letters to the ACT COVID exemptions team.

On Thursday, I was asked to enter the ‘red zone’ and see my first COVID positive patients. This was a whole new level. I am not ashamed to say that I was apprehensive (read: secretly terrified). I was so grateful for the infection control nurse who watched me don my PPE and checked it was all secure enough for me to enter. I opened the door to the unit, and stepped inside.

Several people asked me the next day what it felt like, coming face to face with COVID19 for the first time. How can I even begin to describe the feelings and emotions? It was totally surreal.

I stood at the side of the bed, watching the person struggle to breathe. I’ve seen that many times before, but the difference this time was that while I was watching and worrying, a little nagging voice in my head was saying ‘don’t get too close, watch out, this is real now – you are at risk here’. I’ve never felt that during my nursing career. I momentarily imagined the deadly little spiky balls of virus floating around the room. Involuntarily, I took a small step back.

I closed my eyes, remembered to breathe, and reminded myself that I was vaccinated, had appropriate protection, and that this was a person who deserved the same care that I had given to all my other patients. More, in fact, because the family would not be able to visit or sit vigil at the bedside. Staff would come and go as quickly as possible to minimise contact time. I stepped forward, assessed, and then rearranged the bedclothes. I spoke gently, reassured, comforted. I hoped my words would be heard, my touch noticed.

I left the room, took off my PPE, and put on a new set to see the next person. He was awake, distressed. This time I didn’t hesitate to step forward and do what I needed to do. I told him I was going to organise for some medicines to make him more comfortable, and that I would be back soon. He looked into my eyes and softly said ‘thank you darling’.

On Friday, the two positive patients I had seen the night before had died. I reviewed six patients – three of these had COVID19. I wrote scripts, spoke with families, documented the notes. I felt totally drained, dehydrated, hungry and tired. I left the facility, took off my mask, and sat in the car for a moment to breathe. Deep grooves were embedded into my face from many hours in PPE.

Before driving away, I found the link to the daily press conference and plugged my phone in so that I could listen to it on the way home. Tears rolled silently down my cheeks when the Chief Minister Andrew Barr announced “The ACT has experienced the toughest day of our pandemic response so far. Two Canberrans with the virus have passed away overnight. They were residents of the Calvary Haydon residential aged care facility, receiving end of life care from the palliative care team“.

For the first time, these were not numbers or statistics to me. They were individual people. I had been beside them, touched them, comforted them, and looked into their eyes. I WAS the palliative care team. Their families were already grieving. Hearts were breaking, mine included.

The worst part is knowing it is not over. The worst may be yet to come.