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Patient and Family Engagement E-Letter

Patient & Family Engagement at BIDMC

Our quarterly e-letter tells the stories behind patient and family engagement, featuring the perspectives of patient and family advisors and BIDMC staff who have worked with advisors.

Issue 9, Fall 2014

Dignity and Respect focus of preventable harm initiative

Interview by Erica Dente, Patient/Family Advisor, with Respect and Dignity Workgroup Lead Dr. Lauge Sokol-Hessner and Project Manager Melinda Van Niel

BIDMC has been working on mitigating all preventable harms in the ICU. By defining one harm as the loss of dignity and respect, efforts are underway to spread that work throughout the entire hospital. 

Do you have a working definition of dignity and respect?

Dignity is a person’s intrinsic, unconditional value. Respect includes the actions we take towards others that preserve, protect and enhance their dignity.  

Can you describe the work involved in achieving the goal of preventing the loss of dignity and respect? Who is involved, what departments, what processes?

There are 16 people involved in our core group, and we've been meeting monthly. We have representation from many areas of expertise including patient and family engagement, health care quality and patient safety, nursing, physicians, palliative care, ethics, interpreter services, community benefits, social work and communications. In many ways however, there are many more people working on preventing harm to dignity by treating patients with respect on a daily basis – we have all reached out to our colleagues and patients to understand how to do this work, and have been planning from the beginning to build it within the existing quality improvement infrastructure and culture at BIDMC. We will be using the same processes, groups, and forums that we use to investigate episodes of physical harm to investigate cases where there was harm to a patient’s dignity.

How might the hospital measure the loss of dignity and respect?

We are planning to learn about episodes where there may have been harm to a patient’s dignity or a patient was treated with disrespect by using our Patient Relations database, which tracks concerns reported by patients, as well as event reporting by staff. We're modifying our adverse event reporting system to allow staff to submit respect and dignity related cases quickly and easily. We'll then put these cases through our existing quality improvement processes – they'll be reviewed by a patient safety coordinator, and if deemed severe enough, will then be forwarded to the appropriate departments for more in-depth review. We'll provide guidance to reviewers in the form of a document that provides a framework within which to think about respect and dignity, references to existing standards, examples of questions to consider when investigating cases and suggested "bundles of respect" that might help prevent harm to dignity. Existing standards come from our Patient Bill of Rights as well as other internal policies, and from external agencies such as the Joint Commission or the Centers for Medicare and Medicaid Services. If we investigate a case and find that there was indeed harm and we did not meet the standard of care, that would be deemed an episode of preventable harm and reported on our dashboard just as preventable physical harms are reported.

What do you think is the most important thing for patients and families to know about this effort?

BIDMC was actually the first hospital in the nation to have a Patient Bill of Rights beginning in 1972, so this work is central to the culture here at BIDMC. We believe that by highlighting and investigating these episodes of harm, and evaluating ourselves with respect to the standards we pioneered, we will further improve our focus on patient and family centered care and drive improvement for years to come.

Palliative Care service expands

Interview by Erica Dente, Patient/Family Advisor, with Dr. Mary Buss, Director of BIDMC’s Ambulatory Palliative Care Service.

Congratulations on the completion of year one of the Outpatient Palliative Care Service.

What are the most important things for patients and families to know about Palliative Care Medicine and the type of patient population it is appropriate for? 

Palliative Care (with “P” and “C”) is a relatively new sub-specialty of medicine that aims to improve the quality of life for patients with serious illness. A comprehensive approach to quality of life requires a multi-disciplinary team. Palliative care physicians and nurses have experience and expertise in managing symptoms, such as pain, difficulty breathing, fatigue, and nausea. Social workers and chaplains help address the psychosocial and spiritual distress that patients and families experience in the setting of serious illness that can markedly limit an individual’s ability to function in a variety of roles. Patients with declining health and chronic or progressive illness (and their families) often face difficult decisions about how to proceed with medical care. The palliative care team tries to support patients as they face these choices and facilitate informed choices that take into account, not only the patient’s health status, but their individual values and goals.  Palliative care (“p” and “c”) is an essential component of the care provided by any highly skilled health care professional who cares for serious ill patients.

How does Palliative Care differ from Hospice Care?

Thank you for asking this question. Palliative care and hospice care are often confused. In order for patients to access palliative care in the most timely fashion, it is important for patients and families to appreciate the distinction. In short, hospice has more limits.  Hospice care is largely (though not exclusively) provided in the home for patients who: 1) want to focus their medical treatment on comfort, 2) wish to avoid the hospital and 3) whose doctor feels are likely to live for 6 months or less. There are no prognostic limitations for patients seeking palliative care. Palliative care, in the form of expert symptom management and psycho-social/spiritual support can be provided alongside disease-directed therapy, such as chemotherapy, dialysis, or aggressive diuresis. Palliative care is provided to patients during a hospitalization, in clinic and increasingly, home-based palliative care services (usually by a nurse or nurse practitioner) are available.

Can you describe your program, how it works, and what your ultimate goal for the service is?

The outpatient palliative care clinic is comprised of a physician, a nurse practitioner, a social worker, a chaplain, and our administrative assistant. Upon the first visit to the clinic, patients, who are encouraged to bring their families, meet with two members of the team: either the physician OR the nurse practitioner and either the social worker OR the chaplain. Depending on the needs, a third team member may be brought it. Each patient receives a brief overview of what palliative care can offer and a comprehensive assessment of symptoms, quality of life and psychosocial and spiritual needs and supports. After that, the nature of the visit is largely tailored to the needs of the individual at that time. Patients with moderate or severe symptoms may be seen as frequently as weekly with phone calls in between until symptoms are brought under control. The goal is to provide all BIDMC patients with equal access to palliative care.  Most immediately, this means having clinic available every weekday. Patients with palliative care needs often find it burdensome to make additional trips into the medical center. Whenever possible, we try to link our visit to another appointment on the same day. Currently, we are only open Tuesday morning and Wednesday afternoons. Thus, patients who are seen primarily on other days have less access to palliative care. We would also build collaborative relationships with a variety of providers. Currently, many of our patients have cancer, but in time, we expect to work more closely with other specialists caring for patients with advanced heart, kidney, liver, or lung diseases, for example.

What prompted you to begin an outpatient program?

Increasingly, I felt that I was seeing patients referred during a hospitalization ‘too late’, meaning patients had already suffered with a symptoms for too long or had become so sick from their illness, that it was harder for them to participate in some of the tough medical decisions, leaving that burden to families. By meeting patients earlier in their illness, we have more opportunity to forge close relationships, we can address symptoms and we can anticipate some of the decisions that patients face sooner and help them maintain control of their medical care for longer. We firmly believe that good palliative care integrated appropriately can improve symptom control and help patients avoid unnecessary use of the hospital and the emergency room. The patients we see are truly amazing people with an enormous capacity to enjoy life and express gratitude, even in the face of a very serious diagnosis and substantial symptom burden. There is no better satisfaction than seeing a severe symptom relieved or a patient come to peace with a difficult decision. This work is enormously fulfilling.

Has the outpatient program had an impact on the Inpatient Palliative Care Consultation Service. If so, in what way?

The inpatient palliative care service has noticed two changes. For one, they are busier.  The opening of the clinic has increased awareness of palliative care in general, which has increased referrals. Also, all patients seen in the clinic are “automatically” referred to palliative care, if they get hospitalized. Second, the inpatient service also expresses some relief at being able to refer patients whom they meet in the hospital to a clinic provider to continue the work they have begun. Knowing that what they start in the setting of an acute hospitalization can continue when the patient is discharged makes their work easier. I think the presence of the clinic has also increased our palliative care services awareness of the needs of patients outside the hospital and helped us be more effective in our recommendations to patients as well as to referring providers.

Patient and Family Engagement E Letter - Archive

Now Recruiting - Intensive Care Unit Advisory Council

If you have had a care experience in a BIDMC Adult ICU, consider becoming an advisor and partner with us to help improve the quality of care for patients throughout our critical care units. 
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