End-of-Life Care

Quality of death and dying at Mayo Clinic: A survey of decedents' loved ones

  • Investigators: Elise C. Carey, M.D., and Ann Marie Dose, R.N., Ph.D., C.N.S., both of Mayo Clinic
  • Funded by: Mayo Clinic Program in Professionalism and Ethics, Mayo Clinic Values Review Council, and Division of General Internal Medicine

The purpose of this study is to assess the quality of death and dying at the Mayo Clinic hospitals in Rochester, Minn.; Jacksonville, Fla.; and Scottsdale, Ariz. Through a combination of surveys and in-depth interviews, this study will elicit a deeper understanding of the bereavement process and also give participants a chance to elaborate and share their thoughts on ways bereavement processes can be improved.

As a result of this study, the team hopes to achieve a baseline standard for end-of-life care at Mayo Clinic and beyond.

Advance directive usage among patients with implantable cardiac devices

  • Investigators: Paul S. Mueller, M.D., and Tanya H. Tajouri, M.D., both of Mayo Clinic
  • Funded by: Mayo Clinic

Patients with implantable cardiac devices, such as implantable cardioverter-defibrillators, may develop a terminal illness later in life, rendering their device no longer an effective form of therapy.

End-of-life decisions, such as device deactivation, are made especially challenging when patients have not made specific provisions for their end-of-life care. As indications for devices expand, health care professionals will be increasingly called upon to care for patients who encounter difficult choices to achieve quality of life.

This study looks at the advance directive usage rates of patients with implantable cardiac devices to determine the prevalence of advance directives and whether the implantable cardiac device was mentioned.

An intervention to improve ICD deactivation conversations

  • Investigators: Keith M. Swetz, M.D., Mayo Clinic, and Nathan E. Goldstein, M.D., Mount Sinai Medical Center
  • Funded by: National Heart, Lung, and Blood Institute grant number R01 HL102084

Implantable cardioverter-defibrillators (ICDs) are crucial devices used to stimulate the heart through shocks and terminate potentially life-threatening arrhythmias. The use of such devices has grown exponentially through the years. Unfortunately, while physicians may become more inclined to implant these devices into patients, they do not appear to be as eager to revisit the issue and discuss with patients the possibility of deactivating these devices later on.

As a result, approximately 6,000 patients annually suffer the pain and trauma of ICD shocks near death, which takes a toll not only on the patients themselves but also on their loved ones. To address this issue, Dr. Goldstein at Mount Sinai Medical Center in New York will be conducting a randomized clinical trial of communication education and medical record alerts for cardiologists who specialize in these types of cases.

The investigators hope to determine whether this intervention will succeed in increasing overall conversations about ICD deactivation between cardiologists and their patients. From this, it would also then be possible to increase the number of patients who opt to deactivate their ICDs and decrease the amount of anxiety and depression that patients and caregivers would otherwise have experienced had the patients maintained normal ICD activity.

Characteristics of requests for implantable cardioverter-defibrillator and pacemaker deactivation

  • Investigators: Paul S. Mueller, M.D., and Keith M. Swetz, M.D., both of Mayo Clinic
  • Funded by: Mayo Clinic

Little is known about end-of-life events in and management of patients with implantable cardioverter-defibrillators (ICDs) or pacemakers who have undergone device deactivation. In order to understand the characteristics of requests for implantable cardiac device deactivation, Drs. Mueller and Swetz performed a retrospective review of the medical records of patients with ICDs or pacemakers for whom device deactivations were carried out.

Results of their study will be reported to educate health care providers and encourage early discussion with patients about provisions for their devices at the end of life.

Characterization of patient and physician attitudes toward deactivation of left ventricular assist devices as destination therapy at life's end

  • Investigator: Keith M. Swetz, M.D., Mayo Clinic
  • Funded by: Mayo Clinic General Internal Medicine faculty development award

The left ventricular assist device (LVAD) is a promising new technology used to support patients with advanced heart failure. The device can be used to support and maintain circulation indefinitely in patients who are not transplant candidates, also known as destination therapy.

This project explores the experiences and perspectives of LVAD patients and the physicians who manage their care. To understand the patient experience, Dr. Swetz will employ focus groups to discuss pre-implant decision making, post-device lifestyle changes, advanced care planning and patients' attitudes toward new medical technologies.

The goal of this study is to disseminate these findings into comprehensive recommendations to help patients understand the role of LVAD therapy and suggest ways health care professionals can enhance patient care.

In addition, Dr. Swetz and colleagues have developed a survey to understand how physician providers view their responsibilities regarding LVAD continuation and deactivation. The knowledge gained from the survey will help predict and inform approaches to preventing and addressing ethical dilemmas associated with LVAD destination therapy.

Deactivation of implanted cardiac devices at end of life

  • Investigators: Keith M. Swetz, M.D., and Deirdre R. Pachman, M.D., both of Mayo Clinic
  • Funded by: Mayo Clinic

Implantation of cardiac devices is becoming increasingly common as medical indications expand. However, shocks from an implantable cardioverter-defibrillator (ICD) can be painful, distressing and may negatively affect quality of life in patients at the end of life. Current research has demonstrated that hospice programs are admitting patients with active ICDs, yet only 10 percent of hospice programs have a formal policy regarding ICD deactivation.

This research study seeks to assess the prevalence of policies for ICD deactivation and understand experiences of hospice programs that care for patients with ICDs at the end of life. Surveys will be administered to hospice programs within Mayo Clinic Health System about the care of patients with ICDs at the end of life and practices related to ICD deactivation.

Hospice programs without a formal policy on ICD deactivation will be provided with a sample policy to encourage the development of practice guidelines and policies for deactivation. After one year, programs will be surveyed to assess policy developments and patient outcomes.

Ethical aspects of deactivating implanted cardiac devices: Exploring the natural history of living and dying with a pacemaker or cardioverter-defibrillator

  • Investigator: Paul S. Mueller, M.D., Mayo Clinic
  • Funded by: Mayo Clinic Center for Translational Science Activities Scholarly Opportunity Award

The broad, long-term objective of this effort is to describe how ethical dilemmas frequently arise when new technologies are introduced into clinical practice by using implantable cardiac devices — implantable cardioverter-defibrillator and pacemaker — as a paradigm example.

The knowledge gained from this research will contribute to the science of health care delivery by predicting and informing approaches to preventing and addressing ethical dilemmas created by the clinical application of new technologies and the "treatment imperative" to use them.

Using qualitative methods, Dr. Mueller will examine the experiences of patients from pre-implantation to deactivation and the perspectives of professionals who manage their care, including nurses and allied employed industry professionals (who commonly deactivate devices).