There has been a lot of chatter lately about collaborative care and interdisciplinary teams and of course patient-centered care, yet little changes in the delivery and outcomes of care occur. These terms are more than catch-phrases and trendy terms, but important concepts in how we has health care providers impact the patient and family as being
the center of that care.
Patient-centered care has never been new to me. It is what we were taught in nursing school; the patient comes first. It makes sense, but most delivery care processes are not designed with the patient at the center. We develop systems and processes that are convenient to us, that work around our schedules. This includes administering medications on 24 hour time intervals, restricting visiting hours and bathing patients at night in critical care just to name a few. How many people take baths at 0300 in the real world? This is perfect example of a care process that has evolved to accommodate nursing staff not the patient; hardly patient centered and one that certainly does not promote natural sleep/wake cycles and healing.
But patient-centered care is more than bathing patients during the day and administering medications at times that do not interrupt patients sleep schedules. It includes partnerships and decision-making...
with the patient. Not all patients have the capacity for decision making but most have family or other appointed individual that does. Not all patients understand why their illness or disease process, the reason for hospitalization, but are willing to learn. They need us to educate them.
The key is
active participation. Care that
moves away from "disease-centered" where the disease and subsequent treatments dictate the courses of action
towards "patient-centered" in which the patient and providers discuss and determine the best treatment options for
the patient. This
may mean invasive procedures or simple medication changes; or perhaps no treatment at all such as palliative or hospice care.
Recently Dr Donald Berwick gave a commencement speech at his daughter's medical college graduation. His words were poignant and relevant in this era of cost containment and pay-for-performance and other phrases that pose as patient-centered care. I have provided a brief excerpt here as it is a great example of what we as providers ought to remember each day we interact with patients and their families.
'Dr. Berwick,
'My husband was Dr. William Paul Gruzenski, a
psychiatrist for 39 years. He was admitted to after developing a cerebral bleed with a hypertensive
crisis. My issue is that I was denied access to my husband except for
very strict visiting, four times a day for 30 minutes, and that my
husband was hospitalized behind a locked door. My husband and I were
rarely separated except for work,' she wrote. 'He wanted me present in
the ICU, and he challenged the ICU nurse and MD saying ... 'She is not a
visitor, she is my wife.' But, it made no difference. My husband was in
the ICU for eight days out of his last 16 days alive, and there were a
lot of missed opportunities for us.'
'I
am advocating to the hospital administration that visiting hours have
to be open especially for spouses... I do not feel that his care was
individualized to meet his needs; he wanted me there more than I was
allowed. I feel it was a very cruel thing that was done to us...'
Listen,
again, to the words of Dr. Gruzenski: 'She is not a visitor; she is my
wife.' Hear, again, Mrs. Gruzenski: 'I feel that it was a very cruel
thing that was done to us.'
'Cruel' is a powerful word for Mrs.
Gruzenski to use, isn't it? Her email and the emails that followed that
first one are without exception dignified, respectful, tempered. Why
does she say, 'cruel'?
We will have to imagine ourselves there.
'My husband and I loved each other very deeply,' she writes to me, 'and
we wanted to share our last days and moments together. We both knew the
gravity of his illness, and my husband wanted quality of life, not
quantity.'
What might a husband and wife of 19 years, aware of
the short time left together, wish to talk about - wish to do - in the
last days? I don't know for Dr. and Mrs. Gruzenski. But, I do know for
me.
Someone stole all of that from Dr. and Mrs.
Gruzenski ... Someone who did not understand who was at home and who was
the guest - who was the intruder ...
Of course, it isn't really
'someone' at all. We don't even know who, or what it is. Its voice
sounds rational. Its words are these: 'It is our policy,' 'It's against
the rule,' 'It would be a problem,' and even, incredibly, 'It is in your
own best interest.' What is irrational is not those phrases; they seem
to make sense. What is irrational is what follows those phrases, in
ellipsis, unsaid: 'It is our policy ... that you cannot hold your
husband's hand.' 'It is against the rules ... to let you see this or to
let you know this.' 'It would be a problem ... if we treated you on your
own terms not ours.' 'It is in your own best interest ... to miss your
daughter's moment of birth.' This is the voice of power; and power does
not always think the whole thing through. Even when it has no name and
no locus, power can be, to borrow Mrs. Gruzenski's word, 'cruel.'
What
is at stake here may seem a small thing in the face of the enormous
health care world you have joined. It is as a nickel to the $2.6
trillion industry. But that small thing is what matters. I will tell
you: it is all that matters. All that matters is the person. The person.
The individual. The patient. The poet. The lover. The adventurer. The
frightened soul. The wondering mind. The learned mind. The Husband. The
Wife. The Son. The Daughter. In the moment.
We as providers at every level, have the privilege to enter patients lives and help them navigate a very complicated health care system. It is our duty to educate them and comfort them and respect the decisions they make regarding the care they wish to receive. Even if it means we step out of our comfort zone.
To read the full speech follow this link: Yale Medical School Graduation
To learn more on Patient/Family-centered Care: Remaking American Medicine
