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Moving the model of care for dialysis patients towards more pervasive observation, assistance and support of patient decision making is vital. Patient-centered care that helps dialysis patients make wise decisions in their daily lives will significantly improve their outcomes and experiences.
In his commentary, Dr. Maddux identifies ten action steps that can fundamentally improve the care of patients with kidney disease by enhancing the quality, safety and efficiency of the healthcare system. Achieving these goals will not only help providers give better care, but engage patients in their own care, both of which will increase the likelihood of success in achieving positive health goals and improving quality of life. Among these key actions are:
Putting the patient at the center of care: Traditionally, physicians and health providers were primarily responsible for determining what was deemed best for their patients. While their expertise regarding appropriate treatment and care remains vital, there is an increasing and necessary focus on understanding and incorporating a patient’s values, goals, aspirations and needs into the calculus of delivering care. In other words, it is crucial to base care – and expand the definition of quality care – to include the patient’s perspective. Therefore, patient perspectives should be considered regarding:
- How to evolve our measures of quality of life – Patients, more than physicians, are best suited to decide how to gauge their own quality of life. One patient might describe good quality of life as the ability to exercise regularly and participate actively in his or her community, while another might value the additional time with family or the ability to participate in a birth, graduation or other important event.
- Goals and success of therapy – In that same vein, a patient should be asked what his or her therapy goals are, as well as how the success of therapy should be measured for their circumstances. Again, the answer may be very different for a patient who is working or going to school than for one who leads a more sedentary lifestyle or is nearer to their end of life.
- Their care during treatment – Providers gain great benefit from listening carefully to patients, and understanding what influences their engagement in that care. For example, FMCNA caregivers ask patients what they most wish to see from their care team. Their most common answer: respect and compassion combined with expertise.
Improving technology to enable better care: New technology can go a long way toward giving physicians and providers vital information about the condition of their patients. It can also give patients important information about their own health. As a result, Dr. Maddux suggests researchers and providers should:
- Develop pervasive sensing – Today, in everything from wearable fitness devices to smartphones to jet engine diagnostic tools, “smart” connected technology is helping people collect information and relay it to a centralized database for real-time analysis and insight. The same kind of technology can and should be developed to help physicians and healthcare providers stay connected with patients and assist them in making informed decisions throughout their day, not just when they are in the middle of a health event.
- Employ on-demand health concepts – Too often, physicians may be forced to make treatment decisions based on partial information. Migrating toward on-demand tools and practices can give providers up-to-date information so they can align care with the patient’s current status. Examples to be developed may include:
- receiving key lab tests concurrent with a dialysis session;
- video conferencing with patients when they have new concerns;
- tailoring dialysis prescriptions and schedules to current physiologic needs; and
- ensuring patient-engagement in their care at home or in the dialysis facility.
Measuring what really matters: Outcomes should reflect reality by looking at the big picture. Measuring what really matters means factoring in not only the outcomes of the type of care patients receive, but decisions and barriers that led to the method of care. For example, the preferred method for receiving dialysis is through a fistula, in which physicians surgically create access using the patient’s own blood vessels. But because a fistula takes time to heal and mature, the surgery should take place with adequate time and preparation before the patient may require dialysis. Because many things can slow down that process – from a delay in surgical evaluation to an extended period of healing and maturation of the fistula – those factors should be tracked as well.
Using information to head off a crisis: Intensive use of information and data can help in the development of clinical insights providers can use to intervene before a known health crisis occurs. Nutrition is a good place to start. For example, the traditional standard is to wait until a patient’s albumin (a type of blood protein) is quite low before responding. At that point, the body’s ability to retain its nutritional competence may be compromised. A better path would be to identify patients who are not obtaining enough nutrients and consider prescribing supplements to selected patients in need to prevent a crisis of nutritional decline.
“Improving outcomes is really about involving patients in their own care, from helping them understand the choices they make matter, to determining what success based on shared goals looks like with their care teams,” said Dr. Maddux. “Research shows that patients empowered to participate in their care live longer, consume fewer resources and have an enhanced quality of life.”