Early access makes an enormous difference to quality of life, but many are missing out.
Severe breathlessness is a familiar symptom of COPD. There is also fatigue, coughing, pain, and often unrecognised and untreated anxiety and depression.
“I can’t cure COPD,” says respiratory and palliative care physician Dr Tracy Smith. “I can treat exacerbations and I can make those better, but COPD is a chronic progressive illness. And so from the day that we diagnose it, we are treating symptoms.”
Dr Smith co-leads the Breathlessness Clinic at Westmead Hospital in Sydney. She says palliative care is misunderstood, and for those with COPD it needs to start far earlier than it does.
Palliative care isn’t just end-stage
“We need a very broad understanding of what palliative care is,” Dr Smith says. “It is much more complex and much longer lasting than just the last days or weeks of life.”
This broader understanding needs to extend well beyond end-stage pain relief to physiotherapy, psychology, diet and more – it’s more about quality of life than quality of death.
When it comes to COPD, waiting is inherently problematic because it’s often impossible to predict when the end will come. For instance, the SUPPORT study of seriously ill patients in hospital found doctors vastly overestimated their COPD patients’ chances of being alive six months later.
According to the World Health Organisation, palliative care should improve patients’ and their families’ quality of life “through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual”.
Dr Smith believes palliative care for COPD patients starts with diagnosis, “and that’s something that all respiratory clinicians are, I hope, comfortable and confident with doing”.
Symptom relief doesn’t always come from a script pad
Gold Coast resident Kaylene Watt is just about to turn 70. When she spoke with Allergy & Respiratory Republic, she had just returned from a shopping trip for a new dress for her party. She’s had COPD for around 10 years, but only stopped working in the nursing field about three years ago. “The lifting was getting me too short of breath,” she says.
For COPD patients who suffer a high burden of symptoms, palliative care can have an early and positive effect on their quality of life.
Ms Watt attended a respiratory fitness group, Lungs in Action, for several years. She says it helped her to regain some strength after an exacerbation which left her unable to live on her own. She’s had to stop attending the fitness group since, but as her illness advanced, her palliative care team have been able to find ways to help.
Dr Smith says symptom management is key.
“When managing symptoms gets hard, when it gets tricky, your pulmonary rehab service might have something to offer,” she says. But more complex symptom management may require a palliative care service.
“[I assumed], before I did my palliative care training, that if I’m maximally treating my patient, then that will relieve their symptoms,” says Dr Smith. “And it’s just not true.”
“We don’t talk about it as a topic, we don’t get a lot of training in what to do about that breathlessness. And there is much that you can do, but very little of it requires you to write a script.”
At Dr Smith’s Breathlessness Clinic, patients have access to physiotherapists, occupational therapists, dietitians, and clinical psychologists.
This all-encompassing approach to palliative care can also help with depression and anxiety.
When Ms Watt’s health suddenly took a turn for the worse, it was a blow to her independence. “I couldn’t leave the house for six months. The anxiety was huge,” she recalls.
A referral from her GP brought the palliative care team to her. They were joined by a palliative care doctor via video call.
Ms Watt says , from her very first encounter, palliative care has vastly improved her quality of life. “They were absolutely marvellous, fabulous,” she says of the several healthcare workers who visited.
“They talked to me about how I felt, and they guided me through a lot of things.”
Most COPD patients die without palliative care
Palliative care helps manage symptoms, provides better quality of life, and reduces costs and mortality. For example, data collected over four years from Melbourne’s Advanced Lung Disease Service, an integrated respiratory and palliative care service, showed that in the year after patients started attending the centre, there was a 52% drop in the mean number of emergency department respiratory presentations. Moreover, 84.8% discussed completing an advanced care plan (compared with 14.6% in a prior review), and only 24.6% of those who died did so in an acute hospital bed (compared to a previous nationwide figure of 72%).
Despite the benefits, most patients with COPD die without access to palliative care. Not only are patients with this condition less likely to have their symptoms adequately treated at the end of their lives, but they are more likely to have “aggressive care”– more CPR, more mechanical ventilation, tube feeding, and more time in ICU — than those with lung cancer.
“A common theme is not being offered palliative care services as part of their multidisciplinary team of healthcare providers,” says Amanda Curran, a respiratory care nurse with The Lung Foundation Australia.
Yet research suggests patients with COPD and other lung conditions strongly prefer care dedicated to comfort rather than extending life.
Doctors can refer their patients with COPD and bronchiectasis to the foundation’s support service, which includes information, resources and a respiratory care nurse phone service.
Having the conversation takes clinical courage
Raising the topic of palliative care can be tricky. Limited research on this question indicates that about one-third of patients do not want it mentioned. There is a fine line between maintaining hope and being realistic about the patient’s condition, and some patients feel that it will make them feel hopeless and depressed.
Understandably, many physicians don’t bring it up. They “fear diminishing a patient’s hope [and] lack confidence and formal training on how to discuss dying,” according to authors of a 2011 paper on advanced care planning for COPD patients.
“We need to create an environment in our community that invites the discussion, and where people with a lung disease are introduced to palliative care early on,” Ms Curran says.
Julie Hays was first diagnosed with COPD in 1995. “I’m now end stage, very end stage. Limited. I don’t drive, I don’t go out. I need assistance with all my personal care,” she tells ARR.
Eighteen months ago, Ms Hays started seeing the palliative care team; every three months at first, and now fortnightly. It would have been weekly had it not been for the covid pandemic. She says that working with the team earlier would have certainly added value.
“People perceive [palliative care] as dying. It’s not. It’s a living journey to the dying that they take care of, right from the start. So it’s really important at the start of a chronic illness, which is going to be a terminal one, that palliative care get involved.”
But she says if her doctor had suggested palliative care when she was first diagnosed 25 years ago, like many people, she would have felt afraid. “My perception of palliative care was, oh my God, I’m going to drop dead in the next 12 months. It would frighten a lot of people. And I think that’s why they don’t do it. It’s because of the misconception that pall care is dying.”
Ms Watt is emphatic that palliative care has given her hope, not taken it away. “I could be negative and think, ‘Oh, look, I have 7% [lung capacity] … I can’t do this. I can’t do that.’” But she says the support system provided by palliative care is helping her to live a much better life.
“They did give me hope, not that I’m going to get better, but that my quality of life could be a lot better than it was. I was just sitting in my house, watching TV, really going nowhere. But you can go out there. They gave me hope that night (when they first visited) and they were right to.”
Dr Smith acknowledges palliative care discussions are hard. “It takes clinical bravery to have these conversations with patients because they’re not easy. They are necessarily emotional because they get to the stuff of what it is to be human, and what it is to die. And I think that if that doesn’t affect you on a personal level, then, you know, that’s a problem in itself.”
Advanced care planning is a good place to start
Advanced care planning (ACP) is an important part of palliative care, and Dr Tracy Smith says it’s “low-hanging fruit”. But ACPs are often not considered until the patient is in emergency with respiratory failure. “It’s at that point that the rubber really hits the road. Am I going to intubate this person? Put them on non-invasive ventilation? And that really is the wrong point in time to start thinking about that, because the patient can’t meaningfully participate in that conversation,” says Dr Smith.
The Global Strategy for the Diagnosis, Management, and Prevention of Chronic Obstructive Lung Disease (2017) says involving patients and families in ACP can avoid “unnecessary, unwanted, costly and invasive treatments at end of life, and can reduce patient anxiety”, and research shows that patients with COPD are open to trusted health care professionals raising the matter.
Ms Watt’s palliative care doctor broached it with her on their first meeting. “He said that when you are a resident at the hospital again, and there will be another time, I will send you out this paperwork and I would like to ask you to actually bring it in with you when you come, because it will tell the clinical staff here exactly what your wishes are, to be cared for in the way you want.”
He pointed out that her preferences for care hadn’t always aligned with those of her family, urging her to reflect on her wishes and fill out the paperwork.
Dr Smith suggests starting with “Who should I talk to?” — a very easy question about who the patient’s preferred decision maker is in a crisis (the answer may surprise you) — and then talking about their preferences for the sorts of decisions that person might be asked to make.
“A good proportion of patients, when you outline the options, are quite happy to say, ‘Resuscitation, no thanks, I wouldn’t want that’, or ‘If you reckon there’s not a lot of chance of getting me off a ventilator, I wouldn’t want to go on it in the first place. But we should at least try the bi-level or CPAP,’ or something like that.”
Some patients, says Dr Smith, won’t want to decide, trusting you to make the decisions when the time comes. “That is an enormous privilege and statement of faith, but it also gives you something to go on.”
She says it’s important that the patient tell their family and friends who the decision maker is. “It prevents a whole lot of heartache, and it prevents a whole lot of difficult family conferences.”
Relationships, communication and teamwork are key
The best way to start talking about palliative care depends very much on the patient, says Dr Smith. The longstanding, trusting relationships you build with COPD patients stand you in good stead.
“One of the great joys and benefits of respiratory medicine is that you often know these patients for a long time. And so you often have the opportunity to just plant the seed.”
She recommends approaching the subject of palliative care gradually, not pushing too hard the first time.
“If you’re listening for it, they’ll often give you an in to start to talk about things. You might start with ‘I’m really worried that you’ve been into hospital a few times in the last 12 months.’ Or ‘I’m worried that you seem to be getting a little bit worse, even though we’ve got you on all the medicines that are right for this stage.’
“And then let the patient talk. And if they’re ready to talk about it, they’ll give you a little bit of an open door. It’s important to look out for those moments and to be brave enough to walk through the door with them.”
Cultural issues are hugely important, but making assumptions can result in patients missing out. “There’s a misconception that people from certain backgrounds have family around them, and so they tend to drop off the palliative care spectrum,” Ms Hays warns.
Dr Smith advises doctors to feel their way, and be upfront with the necessary questions.
“There are some cultures where it may not be the done thing to talk to the person about their illness. Ask the patient what their preferences are. And I usually do that in front of the person who thinks they should be the one being spoken to.”
Language barriers can intersect with issues about involving family. Dr Smith says. Involving a professional interpreter, who can offer cultural advice as well, is essential from the start to ensure the discussions happen ethically and legally.
Spirituality and faith can also be a consideration. She suggests asking something like: “Is there something about your faith that I should know about? Or is there a faith leader that you would want to talk about those things with?”
Studies show that an individualised approached and good relationships in the health setting really count when it comes to both prognosis and hope.
Her “very, very good specialist” is the very first thing Ms Hays mentions to ARR. “He’s been very proactive in that 25 years. And I’ve told him he’s not allowed to die or to retire before I die.” Their relationship is “very, very” close and that has been extremely important to her.
But relationships between healthcare givers matter too.
Ms Hays says there can be a disconnect between doctors, specialists and palliative care teams at the early stage of illness, but the connection needs to be made early in order to build trust.
“Gradually, as it gets closer to the end — especially if you choose to die at home, which is my choice and hopefully I can — they’re going to help me on that journey. They’re the living part of the journey. They’re the conduit to dying.”
It’s not just you — some issues are systemic
A team approach, with strong communication between care providers, has real benefits for patients.
Ms Watt has known both her GP and specialist for many years, and says they confer “all the time”. So when it came time to discuss palliative care, they worked in tandem, and she already knew that it was the next stage and was “not afraid”. Ms Watt says that’s been a good experience.
But team care is much more central to palliative care than it is to respiratory medicine in the outpatient setting, Dr Smith says.
In fact, a survey of Australian and NZ respiratory specialists and trainees found “current models of care are fragmented, with little collaboration between respiratory medicine, palliative medicine or primary care.”
Dr Smith notes that while patients over 65 can access help through Aged Care, it can be difficult to get sufficient allied health for other COPD patients outside a hospital environment and “virtually impossible in the Medicare model”.
In addition to the challenge of coordinating appropriate team care for COPD outpatients, Dr Smith says the provision of palliative care for non-malignant disease across the country can also be patchy. This is despite COPD being more prevalent in Australia’s lowest socio-economic, regional and remote areas.
Ms Hays, for example lives in a NSW town bordering the ACT.
“Queanbeyan, which services about 70,000 people with its outlying areas, has two palliative care nurses. But ACT has a brilliant 24/7 palliative care program.”
Chronic understaffing of services is a common issue.
Dr Smith says we need a different model of palliative care provision that allows patients dip into services when symptoms get worse or problems become more difficult. “That requires service redesign at a number of levels.”
COPD is the third leading cause of death worldwide, according to WHO. The evidence to support the early involvement of palliative care to improve the quality of life of COPD patients is strong.
As Dr Smith says, COPD is a chronic, progressive and often terminal condition that needs so much more than just medication if it is to be treated optimally.
Ideally all COPD patients should be offered access to palliative care services early in the piece, not only to help them die a good death but, much more importantly, to ensure they live their best life.
