What Do Patients and Families Want?

What Patients and Families Want in Healthcare

We spoke with hundreds of patients and families around the world, sought the views of renowned experts, and studied thousands of pages of patient safety literature in the field to answer one powerful question:  What do patient and families want when it comes to healthcare, especially during a hospital stay?  Here’s what we learned.  

The number one priority for patients and families:  patient safety comes first, last and always Everything a healthcare institution does needs to be examined through the lens of one fundamental question, “What will this do to keep our patient safe and make the experience of their family better?” No shortcuts around patient safety can be tolerated.   Every provider of care knows what needs to be done to keep patients safe, to reduce harm and to improve the experience of families in the process. No excuses are acceptable when they fail in this duty. The key test for every healthcare professional: How would you treat your loved one in a similar situation?

Second, patients and families expect that providers and healthcare professionals will know their jobs and meet their responsibilities to the fullest. That means following evidence-based best practices, thinking before acting and making sure that the basics, like hand hygiene, are performed diligently each and every time.  These are not just standards of practice; they are a sacred trust.

Third, patients and families want integrity, openness, transparency and accountability in all phases of care. Without these attributes, they cannot make informed decisions about their choice of healthcare providers or whether they are getting the straight goods from the professionals and institutions that deliver their care. This means, for instance, placing all relevant information in respect of safety performance, how patient complaints are made and dealt with and key policies involving patient and family centered care on the provider’s website in an easy-to-access location and in plain language. It also means ensuring that patients know they have a right to see their medical records in a timely manner.

Fourth, patients and families deserve respect. This means treating the patient as a distinct individual, not a disease, condition or age.  As part of the provider’s demonstration of respect, patients want to be consulted in their treatment plan and have their concerns listened to with the greatest of attention. They are, after all, experts on their lives, their values and their own bodies.  Patients and families are frequently the first to notice changes in condition or signs of deterioration, and in many cases, faster than healthcare professionals.  Wise healthcare professionals use this resource to the fullest.

When medication or tests are required, patients and families want a full and frank discussion about the specific risks and benefits. When consent is required, such as with medication or procedures, that consent should be properly obtained and fully informed.  But respect is also shown in simpler things, like healthcare professionals knocking before entering the patient’s room,  introducing themselves by name and occupation, and explaining the purpose of their visit. Respect for patient privacy and dignity, including the use of full-coverage hospital gowns and privacy screens, is a strongly voiced need on the part of patients and families. 

Fifth, families want to be treated as a vital part of the care team, not an afterthought or an inconvenience. Research shows that family involvement with the patient can make a big difference in the quality of care and in the speed of recovery. Families need to feel that they can ask questions and that their concerns will be fully and professionally addressed, not written up in the medical record in a derogatory note, as so many later discover.  But families often need more support from providers and healthcare professionals than they receive to fill the role they need and want to play.  This requires more robust recognition of the stress and exhaustion that quickly envelops them and which can soon compromise their safety, their health, their jobs and their financial well-being. Time and again, we are reminded by families themselves of the extent to which even the high cost of hospital parking can be a burden and an obstacle to their efforts to offer bedside care and support for a loved one.

Key to effective family involvement are such things as open “visiting” hours, providing for overnight stays in certain critical situations, and orientations for patient and family members at admission to give them the kind of information they need to stay safe and know what to do in crisis situations. 

Six, patients and families don’t expect perfection, but they do expect that when healthcare professionals and providers fall short, and harm or the possibility of harm has occurred, it will be promptly and fully disclosed.  Most patients and families reasonably subscribe to the view so ably set out by Sir Liam Donaldson, M.D., when he said:  “To err is human; to cover up is unforgivable and to fail to learn is inexcusable.”  They want answers as to what happened and why.  If harm has occurred, they expect an apology from those involved in the incident and other forms of reimbursement (like parking costs that arise from an extended hospital stay following an adverse event.)  Providers also need to be aware that when harm occurs, they have a duty to treat the emotional impact of it on patients and families as well as the medical event itself. Indeed, many patients and families report that coping with the emotional harm that can lead up to and follow medical errors and breakdowns in care — the sense  of abandoment, betrayal, lack of accountability and absence of respect —  was as difficult to deal with as the medical event itself, and that the impact often lasted longer. 

Seven, when things start to go wrong, patients and families want access to a timely and easily understandable complaint process.  Too many healthcare providers bury their complaint process somewhere on their website that makes detection by stressed out patients and families needlessly difficult.  They also need access to appropriate resources anytime when harm or the fear of crisis can arise, and that means outside the typical hours of Monday to Friday from 9-to-5. And they expect the process will be more than window dressing or just another effort to placate patients and families. Research shows that complaints often precede adverse events. They need to be viewed as major windows into the condition that present unique opportunities to forestall harm. 

Eight, patients and families know that healing occurs not just from drugs or procedures but also from virtues like compassion and kindness. We have set these out in what we have called The Lorraine Finlay Healing  Healthcare VirtuesSM. They are the values that patients and families consistently tell us matter most to them, and which they see as pivotal to the delivery of safe and compassionate care. They expect these values to be embedded in every part of the healthcare system and, especially, in its hospital settings.

These are the thoughts and ideas that inform and guide The Center for Patient Protection, placing the focus on the safety and well-being of patients and their families above all.

Unlocking the Code for Safer Care

What do patients and families want — and need — when it comes to healthcare, and especially during a hospital stay?  In our view, gaining a more complete understanding of the needs of both the patient and the family is the modern equivalent of the Rosetta Stone for healthcare providersIt can help to decipher and identify a host of measures that are indispensable to both the safety of patients and the well-being of families and are essential for hospitals seeking to deliver the best care in the most cost-effective manner. 

 

What do you think patients and families want?  If you are a healthcare professional or patient or family member, we’d like to hear from you.  Let us know here.