The past couple of weeks my management practice has involved crucial discussions with families about their loved ones. For one patient it was his family’s frustration of emergency services more about chaos than serving an elderly, sick, and vulnerable patient. Transferred to the inpatient unit only to be treated with indifference by some and the prolonged wait for a call bell to be answered, confusion that 24 hour care was needed to keep him safe but here he was in a room by himself….The mixed messages from the health team “you need to stay” “no you need to leave now there’s no room for all of you” “I don’t have any information to give you, besides privacy laws forbid me and I have only had the patient four hours, and the doctor is the one to provide the test results and what will be the plan of care”.
The second family their loved one had been in and out of various hospitals, his condition a mixture of co-morbidities that included metastases, renal failure, cardiac issues, profound deconditoning, and the family were absolutely dead set against palliation. Their perspective he just needed more nutrition, a concrete plan to get him moving, and to get him home. Suffice to say it took a number of discussions, a discharge that ended in a re-admit in less than 24 hours, the persistence to explore and build trust and display empathy, coach the staff on viewing the family not as difficult but distressed and how could we de-stress them. To gently move a wife from denying her spouse was dying, “don’t talk like that in front of my husband….it no good for him to hear such talk” “the team say there’s no use, it’s hopeless, how do they know…he is a fighter he has survived more predictions from doctors ‘he’s dying’, than a cat” “we do not want the doctors to actively end his life….so palliative care is a way of supporting him not pushing for death”
A major focus in many organizations is to design and deliver their services to increase customer satisfaction and in the domain of health care the patient/client experience. Patients within the last decade or so have been told they are major stakeholders in the health care system. Their health status reflects where they live, what choices they have made, we can assess how determinants of health influence their lives related to income, gender, culture, language, education status, from demographics to death rates we can amass a mountain of data.
Concurrently we have seen the emergence of the consumer movement, the shift from doing care to them to delivering care with them. You see this in the language of forming partnerships, acknowledging and encouraging empowerment because we need to remember it is their health condition. As nurses we need to be mindful of their intrinsic strength to manage their ailment, to be aware of the potential of power imbalances, not to be judgmental about choices made, or to be frustrated when they share their expert opinions and perspectives on their care needs, priorities, and expectations. Many of us will recognize the challenges when family or patients share their perspectives, question the modalities of care and consult Dr. Google via the internet then quiz you on why X is not being done.
Let’s consider how we used to measure a patient’s success we used rates of compliance and judged their success on meeting criteria usually set by us “the professionals”, for the patient it required them to be passive; following instructions contained within treatment protocols, and if a patient challenged the status quo of their relationship with the professionals, acted in a “rebellious” fashion, were incompetent, and or a nuisance they would be deemed non-compliant aka not getting with the program.
Adherence at least acknowledges that a patient has a more active role than simply follow directions or a directive; collaboration takes place in the context of unconditional support to motivate a patient; to follow the advice provided, as well patient acceptance is connected to the trust they have in their team, supporting their ability to self-regulate an illness/condition or treatments.
Concordance is an active process for both the professional and the patient as it entails building a relationship, being mindful that in our interactions we need to consider the two sets of health beliefs involved. In this way a shared decision can be made that fully considers the patient and the health care team’s beliefs and preferences and to recognize that the patient’s views are paramount = health beliefs. Mutually the care providers and the patients will share their perspectives, respect for the patient’s point of view is vital to forming a therapeutic alliance. This alliance though reciprocal requires us “the professionals” to remember the most important determinations are those made by the patient. This for me captures how we provide nursing with the patient not to the patient.
Health care agencies, organizations, clinics et al measure a number of outcomes and patient experience is a significant factor to confirm the staff are delivering on the why and how of quality patient centred care. The patient’s (or family member) perception is the only input into patient experience, as health care professionals we provide our knowledge, skills, and attitudes to provide patient centred care that includes respect and dignity, information sharing, participation, and collaboration. A patient could be anywhere on the continuum of engaged to disconnected. The patient who is emotionally involved in their health and well being will be more likely to share key aspects of their condition, participate in a plan of action, adhere to the plan, actively engage in using communication technologies i.e. email, Telehomecare, Skype, interact with other patients and the ultimate engagement have a positive influence on their own health status.
The vignettes shared from my practice illustrate the challenges the health care team can face when some core competencies are not provided. Listening, empathy, share information and understand when privacy standards apply, build trust, share knowledge, be hopeful and realistic all are in the domains of nursing practice and yes they take practice to master them. One of the patients is close to being discharged back to his long term care facility, the other patient passed quickly through a respiratory phase that ended his life. His wife was called and as gently as can be done over the phone told of his breathing problem, he died before she arrived to the bedside and the nurses assured her he was not alone, he did not suffer, he went to sleep and they maintained their quiet vigil of being a presence and providing privacy.
Registered Nurse Storyteller, Healer, Scribe, Transformational Leader
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