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How Do We Care?

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Allan Glanville, MBBS, MD, FRACP
St. Vincent's Hospital
Sydney, Australia

As the old year fades into our memory banks and the New Year begins, it is appropriate to reflect. Do we care and specifically how do we care? How do we care for our sick patients, those being worked up for listing for transplantation, those needing assist devices, those on the active waiting list for whom the bell might toll, those who are struggling with the failure of transplantation to meet their ideals and aspirations, those who have achieved a better quality and duration of life from transplant but fear that their graft might be failing and the broader family of loved ones who sit patiently and quietly (well not always quietly!) as we pontificate about diagnostic investigations, progress and potentially beneficial therapies, all of which come with side effects that are sometimes worse than the underlying condition itself. In large units that are well resourced the thoracic surgeon and pulmonologist do not stand alone. They are flanked by a veritable army of nursing healthcare scientists and allied health clinicians who provide the majority of care and often know more about the day to day thoughts, feelings and activities of their patients than the medical practitioner. This army has its own generals, its own brigades, is populated by clinical nurse consultants, clinical nurse specialists, the all-important lung transplant coordinators and those who work with the physical therapies, our physiotherapists, occupational therapists, our speech therapists and importantly our social workers and psychologists who attend to areas, the importance of which we sometimes underplay. It is these warriors who are the frontline troops who deal with the pain, the anxiety and the suffering of our transplant patients at all phases of their patient care journey. They are often most acutely aware of the stress and anxiety of patients who are on the waiting list and patients who see their graft function slowly slipping away.

It is wrong to generalize. Not all surgeons and pulmonologists are divorced and disenfranchised from their patients. Some swing to the other extreme and over identify, usually with individuals with particular problems. In the extreme form, this can be seen as indulging a rescue fantasy but one must not forget the Lazarus syndrome, where to the amazement of all, a patient recovers when all wise counsel had concluded that death was likely if not imminent. The flow on effect of over identification is similar to the phenomenon that occurs in families when there is one very sick child. Occasionally, despite best efforts, the other children do not receive the care and attention they deserve. Perhaps they grow with a greater sense of independence or perhaps they grow with a sense of loss and what determines the outcome is an imponderable. So it is with the majority of our patients, as we tend to focus our care both at a clinician and allied health level on the sickest subset. That may be right and appropriate but spreading stretched resources to adequately cover all patients under our care can sometimes be quite challenging.

So, how do we support the carers? Not specifically the direct carer of the patient, who is usually a close family member, spouse or loved one but those who provide professional care, the nurses and allied health clinicians? The first step is recognition. Recognition that the work that they do is often intangible and deals with emotions and feelings. As a direct result of which, it may have a negative impact hence there is a large burn out factor for all in the caring professions. Realizing the potential negative impact is a second and perhaps the most critical step of caring for the carer. That means practical support by having sufficient staff and rosters that are not punitive. We must also provide down time and collegial support. The worker who is alone with a troubled patient, who is sharing their pain, and who has no one else to whom to turn, becomes isolated, dysfunctional and non-productive. Our duty of care is not just to our patients but to those who care for our patients, and one could add, ultimately to ourselves. While many of these strategies need significant resources, perhaps the greatest resource is the culture and personality of those who work in these wonderful teams. Each must feel at the same time capable of providing high level care in difficult situations but also supported to do so in the full knowledge that they are well appreciated and have colleagues who understand their role, their concerns, their limitations and the difficulties of dealing with the gulf between hope, expectation and reality.

All of these issues are brought into sharp relief when a patient dies or is about to die. The job continues. There will always be more direct patient care needs but it is the interface with the grieving family which tests the equanimity, professionalism and confidence of our duties and our roles as healthcare practitioners. While we can understand anger, disappointment and loss at an objective level, the confrontation with a grieving spouse or parent, in particular, often stimulates a kaleidoscope of emotions that ultimately ask us to reflect on the adequacy of our decisions, our diagnostic pathways, our management protocols and our commitment to communication with the relatives and the families of our patients. This is where our nurses and our allied health clinicians often are more aware of the feelings and emotions of the family, so we should, as managers, listen intently and humbly and take on board the knowledge and experience they have gained during their relationship with the patient. Insights and opinions are often revealed in casual conversations rather than formal interviews and perhaps this is where patients and relatives feel more comfortable discussing issues that are ultimately very important, with the healthcare team, particularly if they feel the issues will not be appreciated by their surgeon or pulmonologist. The overriding principle here is to value each important link in the chain of healthcare we provide to our transplant recipients at every step of their journey and to value the team that provides that. If we start with that perspective, every member of the team will feel valued and their pain, suffering and loss will be supported by the team. No team member should ever feel disenfranchised from the team. No patient or relative should ever feel that they cannot come to any member of the team to share their feelings and concerns. When functioning well, the team is infinitely greater than the sum of its members.

So to answer the question, do we care and how do we care, is complex but it is naive to say some do and some don't, some do it well and some don't do it well. Our job is to ensure that all do it well, all the time. Also, it is critical that the team is a healthy organism, vital and productive, able to anticipate emotional stress, anxiety, pain, suffering and loss and to deal with those with understanding and compassion. We owe our patients and our team members nothing less. I trust the year to come brings exciting challenges, new horizons, internal peace and a quiet confidence in individual ability and team ability to provide excellence in service delivery to our most wonderful clientele. ■

Disclosure Statement: The author has no conflicts of interest to disclose.

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