Originally published by Newshub
A Wellington mother has received an apology from Te Whatu Ora – Health New Zealand after she went to hospital for help with her chronic pain condition but was labelled a “drug seeker” and sent home.
Lower Hutt woman Azarlea, who didn’t want her last name used, was trying to get into the swing of being a new mum when she began experiencing extreme pain. Azarlea has dealt with chronic pain for much of her life because she has endometriosis, a painful condition that affects roughly one in 10 women in New Zealand.
The disorder causes tissue similar to the lining of the uterus to grow outside the womb. It causes extreme pain, vomiting, heavy bleeding and can lead to infertility.
Azarlea was lucky to find a supportive doctor who helped her get surgery which gave her three blissful months without pain.
But the pain returned and Azarlea said she was once again dealing with it on a daily basis. While most days she could manage her symptoms at home, in late July it got so bad she decided to go to the emergency department.
Once there she asked for morphine in a drip because she said it’s the only thing that has helped flare-ups in the past. A nurse gave her a morphine tablet and said he would ask the doctor about the drip.
“It wasn’t working fast enough because when my endometriosis is at its peak it literally feels like your insides are on fire,” she told Newshub.
“I was just so tired, it was 3am and I’ve got a newborn as well so I was absolutely exhausted and I just wanted the pain to stop,” she said.
She said the doctor did some routine tests before telling her she was fine and shouldn’t be in pain because she had had surgery for her endometriosis.
“I sort of knew from that moment he didn’t give a shit, he sort of went real cold,” she said.
While there is no cure for endometriosis, surgery can help relieve the pain caused by the disease. However, it is very common for endometriosis symptoms to return after surgery. It’s estimated symptoms such as pain return for up to 80 percent of people within two years of surgery. This is because the endometriosis tissue can grow back.
Azarlea said after the doctor’s comments she realised she wasn’t going to get any help and just wanted to go home. He offered her a script for drugs she already had at home, not thinking much of it she agreed. She said she knew she already had them but just wanted to leave because she was exhausted and in agony.
The doctor then came back and confronted Azarela about why she was accepting the scripts when she already had them at home.
“He came back and said, ‘I’ve just seen on the computer you’re supposed to already have… [pain medication] at home’. And I said, ‘Yeah I do’. And he goes, ‘Have you run out?’ and I said, ‘No, I don’t think so’. Then he was like, ‘Well you should have enough to last you and I am going to put on the computer not to write you any prescriptions for opioids or anything’.”
Azalea said the doctor then started questioning her about why she had taken so many painkillers over the years. She told him it was because of her endometriosis but he accused her of being a drug addict.
“He was like, ‘You sound like a drug addict, you shouldn’t be asking for morphine in your line’ and I was like, ‘Excuse me?’ I was so shocked and then he was like, ‘Well you can go home now, there’s nothing wrong with you’.
Azalea said the conversation was devastating especially because she was already in a lot of pain, tired and had spent years having her condition ignored.
Azalea said it’s not the first time she’s been accused of being a drug addict while seeking help for her endometriosis so she decided to make a complaint.
In response to her complaint, Te Whatu Ora apologised she wasn’t offered any treatment but said the doctor had concerns about her opioid use.
In the letter, which has been seen by Newshub, service manager of acute care Emily Marsh said the doctor was concerned by Azarlea’s recent trips to the ED.
“In order to respond to your complaint I have shared your feedback with the ED Clinical Head of Department to investigate your concerns. She confirms that the doctor who reviewed your case was concerned about your recent history of requesting intravenous analgesia in ED and then leaving when this was not offered,” Marsh said.
“However you share that the effort was not made to ask about your pain and the history and causes associated with it.
“‘Always Caring’ and working ‘In Partnership’ with our patients to hear their concerns and reasons for presenting aligns with our organisational values. I sincerely apologise that these values were not upheld when you visited. The staff member involved in this interaction has been reminded of this standard.
“Thank you for taking the time to share your experience as this has allowed us to take actions that aid in improving our service,” the letter read.
‘Sick of being in pain’
Azalea said it’s not the first time she’s been accused of being a drug addict while trying to manage her endometriosis.
She said because of her past experiences she decided to confront the ED doctor before she left.
“I walked out of my room… and where the doctors and nurses are their station is right in the middle [of the ed] out in the open… and I walked into there and I said to the doctor…’Hey what’s your name?’ and then I said, ‘You have no right to call me a drug addict, you have absolutely no right, you don’t know who I am and what I’ve been through, what I have fought for, what gives you the right just because you’re a doctor?’
“At this point, I was crying and he just put his hand up and told me I couldn’t be back there.”
She said it was the last straw for her after having her pain ignored for so many years so she made a complaint.
“I’m sick of it, I’m sick of being labelled a drug addict. I am here to get help, I am not here to just get morphine and go home, I am over it.
“I’ve said to my doctors many times, ‘Just take everything out, I am sick of being in pain’.”
This was spurred on when she found out the ED doctor had emailed her GP telling her not to prescribe any more painkillers to Azarlea because she was an addict.
“I was so upset I literally spent the day laying in bed bawling my eyes out in so much pain because I felt so mistreated and so abused.
“I am slowly trying to reduce the pain meds I take because I am sick of it. I’m sick of taking pain medication but if I don’t take it I end up in bed all day, every day.”
Azalea said she’s scared to go back to hospital if she has another flare-up because of how she was treated.
A common experience
Azarlea’s experience isn’t uncommon according to Endometriosis New Zealand founder and endometriosis and pelvic pain coach and consultant Deborah Bush.
Bush told Newshub people with endometriosis often face stigma and struggle to get doctors to take their pain seriously.
“Those with endometriosis seeking pain therapy from emergency departments and hospitals is this really common. And there’s a big back story there and that goes back to the heart really of endometriosis and just the sheer pain of it and the difficulty and the challenges around… people getting help. It’s very common.”
Bush said labelling someone with endometriosis as a “drug seeker” is incredibly stigmatising and doesn’t actually help them manage their condition.
“That drug-seeking term is a horrible term and it is frequently used for people with endometriosis but also others with persistent pain.
“The drugs patients are seeking is because their pain is overwhelming and they’re left with no other place to go than ED.
“I think that term drug seeking is a term that really denies human dignity and it really isn’t consistent with healthcare values.”
Bush said “it’s disgraceful” and irresponsible for doctors to call patients with actual, serious pain drug seekers.
She said language can also play a part in how seriously someone’s pain is taken.
“Pain is usually complex and studies have shown that women often use elaborate pain expressions and descriptions than males who tend to use more actual expressions. It suggests that, where patients are told they are drug seeking or catastrophising their pain, the language used to describe the pain is not understood.
“Again, patients like [this] are minimised, labelled and face the stigma of living with a debilitating and often seriously misunderstood condition. They are trying desperately to be heard, believed and understood and feel reassured that a management plan will be discussed with them,” Bush said.
Chronic pain management is a ‘balancing act’
It’s a view shared by gynaecologist and specialist pain medicine physician Dr Karen Joseph who runs a pelvic pain clinic in Christchurch.
Dr Joseph told Newshub there is an immense unmet need in New Zealand for specialist help for people living with persistent pelvic pain.
She said unfortunately surgery does not fix pain for the vast majority of people with pelvic pain conditions who often rely on emergency departments to manage flare-ups.
Dr Joseph said EDs aren’t set up to properly manage chronic diseases and are already facing huge pressure which means people with persistent pain often don’t have good experiences.
“Emergency departments are under huge pressure. They are also not set up to manage chronic diseases. As a result people living with persisting pain who find themselves suffering a severe flare-up of symptoms with no alternative but to attend ED, do often have a difficult experience,” she said.
Dr Joseph also said strong painkillers such as morphine are not a viable long-term solution for people with chronic pain.
“Whenever we are treating patients we do have a duty to ‘first do no harm’. We know that medical care inadvertently harms many New Zealanders each year. Strong painkillers such as opioids do carry a number of risks. Addiction/Substance use disorder is a risk with the use of strong analgesics. In my experience not that common, but certainly can and does occur even when opioids are prescribed for pain and in standard doses. This is just one of the harms that we try to mitigate when considering whether to prescribe and if so how much,” she said.
“The other risks that we are concerned about include- that while strong pain killers, such as morphine, can reduce pain in the very short term (i.e. a couple of days) if they are used any longer than that, this can paradoxically make pain worse (a problem known as ‘opioid-induced hyperalgesia’). Opioids also carry risks such as outlined by the Faculty of Pain Medicine including “overdose and death, sleep apnoea, sexual and other endocrine dysfunction and driving impairment”.
She said New Zealand is in desperate need of specialist pelvic pain clinics to help people who are living with chronic pain.
“Overseas centres have shown that having a specialist multidisciplinary (MDT) pelvic pain clinic does reduce the need for women living with pelvic pain to attend emergency services and to take strong painkillers.
“MDT pain clinics include specialist clinicians from a range of disciplines, typically: specialist pain medicine physicians, pain psychologists, pain physiotherapists, pain nurses and occupational therapists.”
Dr Joseph said a lack of specialist clinics also places pressure on ED staff who face a difficult balancing act when deciding whether to prescribe pain killers.
“There is a very difficult balance between trying to relieve suffering, and not exposing patients to the above risks. Again as EDs are not set up for treating chronic conditions they are not specialists in managing this difficult situation.”