AS a palliative medicine specialist, I eagerly turned to the table of contents of the newly minted Guidelines for the prevention, detection, and management of heart failure in Australia 2018. My hope was that I would find directions to the section addressing the psychosocial and end-of-life care needs of patients with heart failure, a life-limiting condition with a poor prognosis. My search was in vain.
These clinical guidelines:
“for the management of heart failure seek to provide guidance regarding the clinical care of adult patients with heart failure in Australia based on current evidence” (page 1134)
They are candid about the realities of a shortened life-expectancy and high mortality from both acute and chronic cardiac failure.
“For acute heart failure, survival rates at 1-month in contemporary studies are consistently around 80% and 57–80% at 1 year. Survival rates for chronic heart failure range from 81 to 91% at 1 year and 52 to 63% at 5 years, reflecting a prognosis similar to non-haematological malignancies.” (page 1136)
There is a brief mention of the significant incidence of depression (page 1179) in cardiac failure and a discussion of its pharmacotherapies, but the guidelines do not address possible causes.
And on the third-last page of text (page 1185 – the remaining 20 of 86 pages are appendices and references) there is an “oh, by the way” description of the benefits of palliative care, engagement with the patient’s GP (the only mention of the GP, but I will leave that and the single passing mention of the care of those patients who live in rural and remote areas for others to address) and early referral to palliative care for the patient and their family.
“Despite its benefits, palliative care strategies continue to be underused for patients with advanced heart failure and their families.
“The integration of palliative care into the multidisciplinary heart failure team is effective in reducing the symptom burden and distress experienced by caregivers and patients with end-stage heart failure.
“Palliative care services in the home were also effective in reducing re-hospitalisation.
“Benefits and harm: The benefits of a palliative care service should be considered in patients diagnosed with advanced heart failure.” (page 1185)
I came away from reading the guidelines feeling that they describe, in the third person, the treatment of an organ that sits alone in the world, with little sense of the human that surrounds it.
So where is the recommendation for a person-centred, holistic, physician assessment? What obligations does the doctor have to ensure that their patient understands, so far as is possible, the nature of their heart disease and the treatment options that are open to them? Does the patient understand what their life will be like as a consequence of treatment, both the good and the bad? Where is the duty to ensure that the patient participates in the decision making?
Perhaps, content with their lot in life and not wishing a long drawn-out death, the patient is ready to die and would prefer not to have some of the interventions suggested in the guidelines.
What about family? Where does the patient live, who do they care for, or who cares for them? Are they frightened of dying, either of the process or the state of being dead? How can these fears be addressed? Are there things that are more important to them than treatment?
These questions cannot be outsourced at the end of a long course of treatment, they are at the core of the relationship between a doctor and their patient. They need to be asked by the treating doctor at the time of the original assessment, diagnosis and treatment planning.
I like to think that most cardiologists see themselves as physicians who have acquired the skills and attitudes necessary for person-centred care that are described in the Royal Australasian College of Physicians’ Professional Qualities Curriculum and subscribe to the tenets of Good medical practice: a code of conduct for doctors in Australia.
Appropriately, most specialties create and maintain guidelines that instruct practice within their specialty. I have singled out these guidelines for heart failure only because they have recently been launched with a bit of fanfare.
There is a growing expectation that all guidelines will embed instructions for the treatment of diseased organs into the matrix of care for the whole patient. And as part of that expectation, all doctors should have the skills to manage the common physical symptoms and psychosocial issues that arise for the patients who suffer the consequences of the diseases for which they are responsible. Patients living with life-limiting illnesses frequently have multiple pathologies and, with a limited life-expectancy, must be given the opportunity to make decisions about how they choose to live out their remaining time. Guidelines should reflect this reality. Specialist palliative care services cannot just assume the non-technical care of every person with a life-limiting illness, let alone everyone who is dying.
While we may see the treatment that we offer for a heart (or any other organ for that matter) as an end in itself, patients see us as a means to an end. They come to us because they hope that we can help them to achieve a life that will be better than without our input – perhaps longer, perhaps more comfortable, and maybe both.
However, and as the data reveal, all too often we are not able to meet their hopes for a longer life and we have to help them to focus on the quality of their remaining life and support them while they adjust to the realities of their impending death.
Over my long career in palliative medicine, I have met with countless patients who, after perhaps years of treatment for their cancer, heart disease or multiple sclerosis, have said a short way into our first meeting that “nobody has ever talked to me about these things” (their prognosis, the fatal nature of their disease, what they might choose by way of treatment, and their fears and worries). They were often dispirited and perhaps depressed by their previous disempowerment and were greatly relieved to have the opportunity to talk with me about their death and their wishes for the remainder of their life. Our conversation was often filled with emotion but most of my patients did not shirk from their need to deal with the issues raised by their inevitable mortality, perhaps not always that day but certainly over ensuing days.
Few complained, but many knew that while their disease had been treated appropriately, they had not been well cared for.
The complexity of 21st century medical technology generates an increasing risk that, even with the best intentions, we can cause people harm at the end of their life. It is not sufficient to delegate to the team, or tack palliative care on at the end as an afterthought. We can only provide whole-person care if our interactions and our clinical relationships are founded on such care from the outset.
Clinical guidelines are public statements that shape the whole of our practice and should also send a message to our community about what they should expect from us.
Dr Will Cairns, OAM, is an Ambassador for National Advance Care Planning Week 2018, and is the Queensland Statewide Clinical Lead for Care at the End of Life.