AN article in a recent edition of The Guardian told of the experiences of Sarah, a woman who died from cancer. The journalist was her husband, Mike Addelman. He told the story of Sarah’s suffering from the moment of the diagnosis and throughout her treatment by the oncology team until she was transferred to the care of a hospice where, at last, she found a degree of both comfort and peace.
When I read their story, I was reminded of a consultation on a ward round in 2019 while I was a palliative care specialist locum in a city far from my home. The patient was a middle-aged woman with an advanced cancer who had been admitted for management of her symptoms, rather than end-of-life care. As we sat and conversed about her life, her family, her illness and her treatment so that together we could generate a management plan, she suddenly asked, almost as if an emotion was voicing itself, how was it that in our care she now felt comfortable and safe?
The tone of the conversation shifted. How could it be that she had not felt safe during the journey from the diagnosis to the palliative care service? Her experience of cancer treatment had been all about the disease and the drugs, tests, side effects and responses. Now, in the palliative care ward, she could express how she felt. She talked about her fears, cried about her grief and that of her family, made jokes, discussed funeral arrangements and talked about what she would prefer us to do.
Our conversation was not different from the many thousands of such meetings with patients with all kinds of fatal illnesses that happen as part of everyday practice in palliative care across the world. They do not exclude family unless the patient wants them excluded. They are open to any topic that is of importance to the patient, and may also, by necessity, sensitively raise issues that clinicians feel cannot be safely left as sleeping dogs. They do not try to avoid the tears that come with the release of emotions that have been kept behind unopened doors.
And every palliative care specialist will have heard numerous dying patients say the words,
“No-one has ever talked with me about these things before [that a response to treatment is not cure, their disease is incurable, their life expectancy is short, the benefits of reflection on the life they have lived, consideration of how they would prefer to spend their remaining time, and of preparing for the end of their life].”
Many people know at some level when things are not going well; perhaps they are aware that their body is not right, or maybe they pick up the vibes of their treating doctor or other staff. Frequently, however, they are either discouraged from exploring these perceptions or believe that their doctor would initiate discussion if it were important. Others have been told their disease was not curable from the outset, but no one ever checked they understood what that meant or asked them what they thought or felt about it.
Many are taught that they have duty to fight their disease, that positive thinking will help them achieve a cure, and that even to think about death will increase the likelihood of their dying. They can be discouraged from contemplating that every life is finite and that perhaps there might be things that are more important for them to do than to receive treatment that may simply prolong their life, or even prolong their dying.
Recent research suggests that not dealing with such issues is harmful to patients. An article by Temel and colleagues from 2010 (to which I have referred previously) reported on research that found that patients with advanced lung cancer who were referred to the palliative care team while they were having conventional treatment had a better quality of life, better mental health, received less anticancer treatment and, to everyone’s surprise, lived significantly longer. The palliative care team were better at managing symptoms, but also addressed patients’ emotional concerns and their preferences for their life and their treatment. And they participated actively at the core of decision making about the when and what of patients’ anticancer treatments.
Since the patients who received the referrals to palliative care lived significantly longer than those who did not, one must conclude that either integrated psychosocial care and symptom relief prolonged life or that the treatments that those patients had avoided actually killed people, or a combination of the two.
While this article studied patients with cancer, these are issues for all clinicians treating patients with life-limiting illnesses. So, why is it that these benefits were achieved, and why should all people with serious illness be referred to palliative care services?
The protocol for the research by Temel and colleagues includes the following reasons for conducting the study:
“The most significant barriers to providing appropriate and timely levels of palliative care to patients with advanced [non-small cell lung cancer] are:
- the existing standard-of-care practice of sequencing palliative care after cancer-directed therapies have failed;
- oncologists do not consider symptom management as a significant priority in the care of patients with advanced cancers; and
- most oncologists are ill prepared to adequately provide care for the physical and psychosocial symptoms that their patients typically suffer. As a result of these barriers, many physicians can be considered a significant cause of patients not receiving appropriate palliative care throughout their illness”.
When we manage a patient’s cancer (or any other life-limiting illness) sequentially – disease treatment followed by holistic palliative care – we are failing to acknowledge that the emotional challenges for patients dealing with a threat to their life run in parallel with treatment from the moment that they suspect that they may have a serious illness. From their first disease-focused consultation, the countless patients with life-limiting illnesses who line up every day in specialist clinics for their dialysis, cardiac failure review, surgical assessment or chemotherapy or radiotherapy are confronted by a range of personal existential, religious, philosophical and psychosocial issues, in addition to any disease- and treatment-related symptoms. By the time all anti-disease options have been exhausted, a patient may have been dealing with thoughts of their impending death on their own for a number of years.
The trial showed that patients achieve better outcomes when palliative care teams manage the gaps in the care provided by disease-focused specialists. The trial does not conclude that palliative care teams are the only people who can provide whole-person care. The trial is irrelevant to those role-model oncologists and specialists in other fields who have always provided good symptom control and are attentive to the emotional and psychosocial needs of their patients.
The trial’s palliative care team was simply providing the routine whole-person care of patients for which doctors are responsible. All doctors can:
- engage with their patients to discuss therapeutic choices in the context of the patients’ own goals and preferences;
- treat disease to contemporary standards;
- manage symptoms with equal priority to the treatment of disease;
- throughout the course of their therapeutic relationship, address the psychosocial needs of their patients who are dealing with the threat of their disease and its treatment to their life, to their family and its wellbeing, and to their existential values and beliefs around the meaning of life generally, and their life in particular.
Those doctors who already take on these tasks know that for most patients these are not impossible challenges. Most people are able to deal with their mortality reasonably well if their distress is acknowledged and they are given appropriate and kindly support. My conclusion from the article by Temel and colleagues is that the care of people with life-limiting illnesses is a generalisable skill that is a core responsibility of all doctors. For those people who are found to have more complex issues, referral for appropriate specialist support, be it for symptom control or counselling, is entirely appropriate.
I think that many of us who work in palliative care had hoped that the results achieved by Temel and colleagues would be a catalyst for oncologists (and all other practitioners treating people with serious life-limiting illnesses) to start to introduce the principles of whole-person care into their practice. A drug that increased survival and produced fewer symptoms, even if it cost $150 000 per patient per year, would have had the prescribing specialists and associated manufacturer-funded lobby groups storming the doors of Parliament.
The real-world consequence (excluding those already providing such care for their patients) was that many disease-treating doctors did not change their practice. Many of the doctors who did respond to the revelation of the benefits (mostly oncologists only because the trial was in cancer patients) simply referred their patients to their local palliative care service, but without fully integrating decision making as per the research protocol. The charitable view is that that is what the article implied.
The less benign view is that many disease experts were content to continue to restrict their role to that of a disease-treatment technician rather than take on those core doctor’s responsibilities that they found too difficult or too time-consuming (see my InSight+ article Putting heart back into heart failure guidelines).
I don’t think that those clinicians who focus solely on the disease and its treatment are indifferent to their patients’ needs. Perhaps they fear that by leaving ajar the door to open discussion they will have to deal with discussion of the “what ifs”, their patient’s emotional state, and perhaps even consider their own mortality. Others may be concerned that discussing the inevitability of death will cause their patient to give up on a treatment that validates their role, or have difficulty facing up to the uncertainties that exist across medicine, and life in general.
In an era when a patient may see multiple specialists, it would not be appropriate to expect that each should deal with every patient’s emotional issues. However, the doctor who has primary responsibility does have that duty.
Definitions of palliative care have drifted away from the clinical starting point of care for people who are dying by dropping mention of the word death and embracing as our clientele anyone who is dealing with a life-limiting illness. Our definitions imply that palliative care referral (and by the description imply specialist palliative care) should be part of normal care from the time of diagnosis for those with life-limiting illnesses.
Mark Addelman’s story of the distress experienced by Sarah over the course of her illness is a recurrent theme in palliative care. While neither comprehensive care by the doctor who is treating a person’s disease nor specialist palliative care can resolve all issues for all patients, the description of how her life changed after she was referred to the hospice indicates how whole-person care is so important in helping people to deal with the diagnosis of a fatal illness.
The oncology team were clearly assiduous in their efforts to treat Sarah’s disease –
“Our oncology team were amazing: they left no stone unturned when it came to trying to find ways to help to treat Sarah’s symptoms.”
However, I think that the team believed, and allowed their patient and her family to believe, that it was sufficient for them to treat her cancer, and that it was not their role to address Sarah’s mental wellbeing.
Mike Addelman also wrote:
“I make no criticism of our dedicated and caring NHS clinical staff. They are not to blame for a health culture that has always been more interested in the physical than the psychological, though the result of that imbalance is often tragic, especially when it comes to people with terminal illness.”
I think that this misunderstands culture. Culture is the sum of the beliefs, values and behaviour of all participants. The culture of our health care system is determined by how we think and what we do as health workers, particularly doctors, but also by patients, families and the community at large. We all contribute in our own small way to the shortcomings of the culture of health care.
Over the course of the 20th century, we embraced a health culture driven by the notion that our job was to treat disease. In the process, we forgot the words of Sir William Osler (1849–1919), an iconic Canadian physician who over the course of his long and distinguished career was the first to introduce clinical bedside teaching for medical students and postgraduate training for doctors, and subsequently became the Regius Professor of Medicine at Oxford University;
“It is much more important to know what sort of patient has a disease than what sort of disease a patient has.”
We have forgotten, never learned of, or even dismissed, the concept that most patients simply need their doctor, the one who is managing their care, to care for them as a person with a disease rather than as a disease to be treated.
For further exploration of these issues I recommend Ranjana Srivastava’s book, A better death: conversations about the art of living and dying well.
Dr Will Cairns is loitering on the brink of retirement from his role as a palliative medicine specialist based in Townsville.
If this article has raised issues for you, help is available at:
Doctors’ Health Advisory Service (http://dhas.org.au):
- NSW and ACT … 02 9437 6552
- NT and SA … 08 8366 0250
- Queensland … 07 3833 4352
- Tasmania and Victoria … 03 9280 8712 http://www.vdhp.org.au
- WA … 08 9321 3098
- New Zealand … 0800 471 2654
Medical Benevolent Society (https://www.mbansw.org.au/)
AMA lists of GPs willing to see junior doctors (https://www.doctorportal.com.au/doctorshealth/)
Lifeline on 13 11 14
beyondblue on 1300 224 636
beyondblue Doctors’ health website: https://www.beyondblue.org.au/about-us/our-work-in-improving-workplace-mental-health/health-services-program
The statements or opinions expressed in this article reflect the views of the authors and do not represent the official policy of the AMA, the MJA or InSight+ unless so stated.