Are we moving toward a more collaborative approach between patient and doctor? Or is it the same old culture of ‘deny, protect, silence’, asks Helen O’Callaghan.
Once upon a time, we put our unquestioning trust in our doctors, in our healthcare service. But a revolution has been happening, quietly, unstoppable.
It began with the Internet. We started to scroll and learn — to ask whether there were alternatives to long-term use of steroids for skin conditions, or which works better: cholesterol medication or a modified diet.
Social media arrived and suddenly there was a community of patients out there — no matter what our ailment — whose experience we could tap into.
“The Internet has democratised information,” says Donal Buggy, Irish Cancer Society head of services.
Cervical cancer campaigner Vicky Phelan — whose memoir Overcoming has just been published — has questioned doctors since she was 19 and in a serious car accident in which her boyfriend Christophe and friend Lisa died.
Phelan is quick to say she has met some “fantastic doctors” in the Irish health service. “Any of the consultants dealing with my daughter’s congenital disorder have been fabulous.” But when her cervical cancer returned in 2017, she soon realised all she was being offered was palliative care, which would keep her alive for a short time and with poor quality of life.
The Limerick mum-of-two wonders why she wasn’t referred to another oncologist who could tell her about clinical trials.
“I was left on my own,” she says. For four weeks, she researched to see if there were other options. She found out about Pembro, a type of immunotherapy that stimulates the body’s immune system to fight cancer cells. It was licensed for cervical cancer in the US but not in Ireland.
“I’m not the type of person who takes no for an answer,” says Phelan, who went on Pembro in April 2018.
“It was very timely — another two months and I wouldn’t have been here.” She can stay on Pembro for two years — or until she has had a set number of doses, whichever comes first. Describing herself as “always a planner”, she has already arranged a back-up. “It’ll mean going to the US. I’ve already spoken to the oncologist and I’d be eligible for that [drug] trial if and when I go.”
She says doctors must allow patients to be partners in their own care. “There are some really fantastic professionals who are doing it, but it’s not mainstream yet.”
Undoubtedly, individual doctors are aware patients need to be front-and-centre of their treatment, early signs are encouraging, but there’s a way to go before a patient-first policy becomes widespread.
Stephen Teap, whose wife, Irene, died from cervical cancer, says the couple were “always into the detail of what was going on” when it came to their health. He recalls a question Irene put to the consultant when she was diagnosed. Her younger son, Noah, was 18 weeks old and she wondered if she could continue breastfeeding him during treatment.
Not getting an answer to her question, Irene asked again – and still didn’t get an answer. “She found a US-based researcher gave him the name of the drug she was on. He said no, she shouldn’t breastfeed while on that drug and, once off chemo, she’d need to wait 21 days before breastfeeding again.”
A member of the CervicalCheck steering committee, Teap doesn’t yet see a patient-first policy really taking hold in Ireland. “It’s vital it does, but there’s a ‘deny, protect and silence’ culture within health here. The only way we’re ever going to move forward is to put patients first.”
Stephen McMahon of the Irish Patients’ Association is hopeful about the Government strategy in Sláintecare — billed as a ‘roadmap for building a world-class health and social care service for the Irish people’ — but only if it’s properly funded.
Buggy says Sláintecare is very much a patient-led approach but it will take time. He believes patients do broadly trust their doctors. “Medical healthcare professionals are still among the most trusted of all professions.”
Buggy also sees that delivery of healthcare has changed — a big change is the multidisciplinary team approach to cancer.
“In the past, treatment options weren’t as many, so there weren’t as many decisions to be made. Now we have better ideas about how to treat cancer, about what’s likely to work best, and we can personalise available treatments to needs of the individual and their disease. In the cancer area, the conversation between doctors and patients is very much collaborative. And it’s a conversation now — it’s not dictatorial.”
One finding of the Scally report on CervicalCheck was around the language used by health professionals. “Some of the professional bodies weren’t prepared for these conversations and — not being prepared — went back to that very dictatorial approach. That does need to change. I believe it is changing, and the Irish Cancer Society advocates for these changes to take place more rapidly,” says Buggy.
Pointing out that healthcare was traditionally structured around the institution rather than the patient, Buggy says we’re moving from a past where ‘Doctor knew best’ to a more collaborative approach. “Thankfully, more and more healthcare professionals are buying into this. But has it gone all the way? Absolutely not – it’s a process.”
Another sign that things are moving in the right direction is that doctors seem more open to the role of complementary medicine in healthcare. Dr Vincent Carroll is chairperson of the board of ARC Cancer Support in Dublin, which offers ongoing support to those living with cancer and their carers.
A former public health doctor with the HSE, he runs a small general practice in Sandymount but is mainly an acupuncturist. For people diagnosed with cancer, Dr Carroll says it’s very important they have hope and optimism and are in the right frame of mind to take advantage of treatment.
At a minimum, Carroll says acupuncture helps by increasing motivation, allowing more regular sleep pattern and increasing energy. At ARC Cancer Support, they’re seeing a year-on-year increase in people coming for a range of therapies including acupuncture, reflexology, tai chi, counselling and psychotherapy.
“Many of our referrals to ARC come from the oncology departments of hospitals. People find their way to us on the promptings of oncology nurses and consultants.”
New training practices for doctors suggest patients are being placed at the heart of the medical system. Consultant stroke physician and geriatrician Professor Joe Harbison is director of Undergraduate Teaching and Learning for the School of Medicine at Trinity College, Dublin. Third year medical students have just started on the wards.
“We did a ceremony to mark that transition. They all had to stand up and read out the Declaration of Geneva. The first half of that Declaration is all about the patient — you answer to one person and that’s the patient,” explains Harbison, who confirms the training emphasis until Christmas will be on communication and taking case histories.
“These are kids straight from school — they may have come from a very academic background. Some are instantaneously relatable — they find it very easy to go in and talk to people. Others are shy, hesitant, they find it very difficult and embarrassing — to go in and meet someone you’ve never met before and ask them personal questions, it’s almost an alien act. This training is a process to get used to that, whereas in the past they’d have been dumped in the deep end and let sink or swim.”
Harbison finds no real difference in health outcomes between the NHS and the HSE. But he says they’re “remarkably different” when it comes to attitude.
“People tend to be very suspicious of the HSE. There’ll be a good news story about the HSE on social media and underneath a whole lot of responses starting with ‘yes, but what about…?’ Some is fair criticism but some isn’t. You’d (be concerned) that fear of criticism within the HSE would prevent innovation and implementation.”
A good development is the HSE’s backing of the ‘Hello, my name is…’ campaign, which reminds staff to go back to basics and introduce themselves to patients properly. Spearheaded by the late Dr Kate Granger, who described it as ‘the first rung on the ladder to providing compassionate care’, the HSE says it’s the start of making a vital human connection, beginning a therapeutic relationship and building trust between patients and healthcare staff.
Buggy says, when you’re in an environment where you feel uncomfortable, to have someone introduce themselves is disarming and breaks down barriers. “It puts you at ease. And when you’re at ease, you’re more likely to ask questions, raise concerns and have a partnership approach to your health.”
Buggy agrees “absolutely” that it’s very important to manage expectations — doctors aren’t gods and most are doing their best in a complex medical landscape.
Harbison, a doctor for 25 years, says more patients now question the doctor in detail, but there are still those who say – when a medic’s explaining a procedure – ‘sure Doc, you make the decision’. Harbison finds this “not be the most desirable thing for a doctor to hear” – because doctors have a responsibility to explain to patients.
A doctor’s job is always going to be demanding, he says. But patients’ demands have increased. And there are higher expectations.
“That’s not necessarily a bad thing. But are they higher expectations that a hospital isn’t meeting – or higher expectations that aren’t meetable? If somebody’s had a bad stroke, you just can’t treat it. You can’t sort everything. And you get a little bit more today of ‘I’m not accepting that you can’t do anything’.”
The frontline staff, he says, will most logically get the brunt of patients’/carers’ anger, upset and frustration.
“Grief is common in hospitals and grief isn’t just about death. There’s grief if your mum or dad isn’t going to get the outcome you hoped for. And one of the symptoms of grief is anger – in the past that anger might have been internalised. Today it’s a bit more externalised – and that’s a demanding part of the job we all face.”
For Teap, the healthiest relationship between medic and patient is a mutual one, built on trust and respectful of everybody.
“The patient’s voice needs to be placed throughout the hospital system. Wherever there’s a committee or board, there needs to be a patient representative of the correct age/gender profile for that disease/area. That will bring a patient-first approach.”
How does he feel about lack of consultation within the CervicalCheck steering committee?
In her everyday life, Vicky Phelan is approached a lot by people. They tell her: ‘I’m going to ask more questions now — I’m not just going to accept what I’m being told’. She says this gives her great hope: “Because it’s the start of us taking back control of our health.”