As our country’s population ages at an unprecedented rate, we must be prepared to care for them, both as loved ones/caregivers and health care professionals. For aging patients with chronic illnesses such as heart disease, this is particularly important. This topic impacted the two of us in a very personal way. Although we have spent both of our careers in clinical and leadership health care positions, we were stunned by events surrounding our patient with heart failure, as she was a beloved mother to one of us, and a sister and best friend to the other. The symptoms of her congestive heart failure came on suddenly and crept along forebodingly for a year and a half before the one-two punch came out of nowhere – a cardiac arrest while she was driving her car to a routine medical appointment. Miraculously, she was rescued and resuscitated by bystanders, including several physicians who happened to be nearby.
The seven months that followed were the most painful and difficult that we have ever experienced. Three cardiac arrests within 24 hours led to therapeutic hypothermia, extracorporeal membrane oxygenation (ECMO), left ventricular assist device (LVAD) implantation, tracheostomy, GI tube placement, and multiple complications including femoral hemorrhaging, GI bleeding, kidney failure, crippling deconditioning and serious infection after infection. During this time, she was shuttled back and forth between the ICU and a long-term acute rehab hospital. As we look back on that time through the lens of both healthcare professional and dedicated caregiver, we have identified a significant number of clinical processes and decisions that beg for improvements. Ultimately, she died not from her heart failure, but from a massive infection and septic shock, one of many complications that were a result of the extended amount of time that she was hospitalized and the expensive technology that initially saved her, if only for a few months. Our experience as her primary caregivers throughout her long and complex hospitalization, and the many system and process failures that occurred, have spurred us to communicate these issues in several formats, as well as seek to partner with healthcare organizations to improve the patient and family/caregiver experience. There are so many factors to consider when making health care decisions for our aging patients and family members, especially those with conditions that require costly treatments and interventions that cause complications that are equally as severe as the primary diagnosis itself.
These issues also underscore the importance of having a strong advocate at the bedside for those patients who can’t advocate for themselves, especially our compromised and/or elderly loved ones. Here are some of the key areas that we identified as needing improvement, and that an effective patient advocate must be prepared to address:
- Coordination of Care – The transition of care from one care setting to another is one of the most vulnerable points during a patient’s care, leading to quality and patient safety issues. During our sister/mother’s hospitalization, she experienced multiple transitions of care. We were alarmed at the lack of communication of critical information, as well as the absence of a coordinated plan of care between these care settings. We frequently had to step in and act as the care coordinator and educator, although we also found that many clinicians were initially reluctant to listen to us.The importance of the presence and active involvement of family members and other caregivers to a patient’s well-being and recovery cannot be underestimated. We are the people who know the patient most intimately, and can tell when something is not right. Most often, we are also present through the numerous physician visits and change of shifts, keeping track of changing and sometimes conflicting treatment plans, and alerting other clinicians to any issues.
- Shared Decision Making – With our sister/mother unconscious and on life support during her initial hospitalization, we were forced to make immediate decisions on life-altering procedures, such as putting her on ECMO to keep her alive until she could regain consciousness to participate in the decision to move forward with what was considered her only hope, an LVAD. Ginny knew from previous conversations that she did not want to consider an LVAD if her heart failure progressed, and we struggled with the decision. This was compounded by inadequate educational materials and pressure by the medical team to implant the LVAD, as they felt it was the only option. After taking a firm stance to wait for her to regain consciousness before we made these medical decisions without her, she awoke enough for us to convince the medical team to include her in the discussion, and she agreed to the surgery. However, looking back we realized how severely impaired her cognition and comprehension about her condition was at the time.Much work has been done recently on determining standards for decision aids to help inform patients of their options and help them take a more active role in decisions about their healthcare treatment options that reflect their personal goals. Research has shown that the use of these decision aids improves patient outcomes.
- Palliative Care – Patients must be fully informed of the pros and cons of any treatments, with palliative care offered as an option if appropriate. For patients with life-threatening conditions, such as our sister/mother, a discussion with a palliative care team to develop an Advanced Care Plan should have happened early on, and should have included a discussion about how her advance directives and preferences may change after having an LVAD implanted. As it was, we had to make the heart-wrenching decision to turn off her LVAD after she became comatose as a result of severe septic shock, with no chance of recovery – something we were not prepared for, and that had never been discussed with either her or any of us.
We hope that by relaying some of the challenges we faced during this extremely difficult time, we can help future patients and their caregivers enjoy a better healthcare experience, as well as assist healthcare providers to provide the safest, most efficient and dignified patient and family-centered care.
By: Melinda Kane, MS-HCM and Ginny Meadows, MSHI, RN-BC
Reference to our longer article: “Finding A Better Way” published in Circulation: Cardiovascular Quality and Outcomes.