When a patient’s illness escalates to an advanced disease or when a loved one suddenly dies, it is an emotional and stressful time for patients, family members and caregivers, who face many difficult decisions. Patients with an advanced condition need to determine what their care goals should be, and family members who have lost a loved one are burdened with a host of decisions during a time of grief.
And many physicians and healthcare leaders believe there continue to be care gaps with regard to end-of-life planning services and resources within the healthcare system.
Leading healthcare provider organizations and digital health companies are increasingly focusing their efforts on end-of-life planning and advance care planning in to order to deploy healthcare resources more appropriately to patients and families and promote a better patient experience. In many ways, digital health technology can play a crucial role in improving end-of-life planning and advance directives, and it’s an area that is long overdue for modernization and innovation.
“The reality is there are so many patients at Cedars-Sinai dealing with advanced disease and there are currently limits to what we can do in the traditional healthcare system to support people after a loved one dies,” Bradley Rosen, M.D., director, office of care transitions, medical director, supportive care medicine at the Los Angeles-based Cedars-Sinai Medical Center, says.
In the hospital setting, bedside and crisis nurses customarily offer support to families following an immediate loss, yet many physicians, like Dr. Rosen, believe hospitals should provide more resources to families for end-of-life decisions, planning and support as part of an organization’s relationship with patients and their families.
Cedars-Sinai recently announced an end-of-life planning partnership with digital health startup Grace, a Los Angeles-based company that developed an online platform to help families deal with the modern logistics of the death of a loved one. Through this partnership, Grace provides concierge end-of-life service, such as funeral planning services, to families of dying or deceased patients. Often, families need assistance with a number of logistics, including understanding hospice, funeral costs, managing paperwork, closing out accounts, contacting friends and additional family members, arranging care for dependents or pets, determining who is in charge of an estate, securing property, and arranging organ donation, among other tasks, according to Alex Kruger, co-founder and CEO of Grace.
Kruger says the company integrates a “human touch” with the online platform to provide families with the services they need. “Our aim is how do we reduce the pain in the administrative side and enable the family to spend more time focusing on each other,” Kruger says.
“Now when any member of the clinical team is taking care of a patient who has an advanced disease, a patient who has just passed away, or if a patient is going home with a care plan focused on comfort, we are now able to make a referral to the Grace team and introduce this valuable service to the patients’ families.” Dr. Rosen says.
Richard Riggs, M.D., vice president and CMIO at Cedars-Sinai, says, from a services point-of-view, end-of-life planning is “a very disorganized space.” He says, “There are so many arrangements that need to be made with funeral homes, all the legal pieces that families need to understand. That whole space has not had a national solution that is easily understood or interpreted to really be effective.”
He adds, “I do think that there’s a sensitivity around end of life and it’s an area that we are looking to accelerate innovation.”
There also has been an ongoing movement within the healthcare industry on the policy front to educate and empower patients and providers about the importance of advance care planning. This past January, the Centers for Medicare & Medicaid Services (CMS) began reimbursing doctors and other professionals for end-of-life discussions with patients. The benefit covers multiple conversations and is not limited to patients close to death.
There have been a number of developments in digital health technology just in the past two years that’s driving a more patient-centered approach to advance care planning. MyDirectives, a service of Dallas-based ADVault, is a completely digital advance directive that enables patients to create emergency medical care plans, including preferences regarding palliative and hospice care. Taking it a step further, the MyDirective mobile app enables consumers to digitize their voice and thoughts in a legal advance care plan. The app lets consumers place critical emergency health information in front of the lock-screen on the iPhone in conjunction with Apple Health and its Medical ID program released with the i0S8 platform.
Furthermore, Rockville, Md.-based Get Real Health, developer of the personal health record platform InstantPHR, is now partnering ADValut to make MyDirectives available through the InstantPHR.
And, earlier this year, Great Lakes Health Connect (GLHC) in Grand Rapids, Mich., announced it has partnered with several organizations to add advanced directives to its health information exchange (HIE) registry. As part of this effort, Michigan hospitals, physicians, and advocacy organizations are increasingly assigning a patient care advocate to patients, assisting patients in creating advanced directives, and educating them about the benefits of sharing these documents within the GLHC repository for access by other network participants statewide.
However, there are many physicians who point out that there is still much work to be done in this area. According to a recent survey, while most physicians consider end-of-life and advance care planning conversations important, there are barriers to these discussions, and electronic health records (EHRs) are one obstacle.
The John A. Hartford Foundation, the California Health Care Foundation and Cambia Health Foundation conducted the survey, entitled “Conversation Stopper: What’s Preventing Physicians from Talking with Patients about End-of-Life and Advance Care Planning?” As I reported on that survey in Healthcare Informatics back in April, most physicians (75 percent) believe that they, not the patient, another doctor or other healthcare professional, are responsible for initiating these end-of-life panning conversations, however, only 14 percent reported that they have billed Medicare for an advance care planning conversation since reimbursement.
In that survey, physicians identified a number of barriers to these discussions. One in four (24 percent) reported that there is no place in their EHR indicating if a patient has an advance care plan, and for those whose EHR systems have that functionality, a little more than half (54 percent) said they can access the plan’s contents.
Dr. Riggs with Cedars-Sinai echoed these concerns. “Advanced directives are not really shared in the HIE world. We share clinical information, and with an advanced directive, you can scan it and put it into a medical record and you can put in the advanced directive that there’s an order that the patient does not want to be resuscitated, but the actual details of that are buried in the advanced directive. Information such as, do you want to be intubated, we don’t share that information nationally,” he said.
And, according to the survey noted above, only three in 10 respondents (29 percent) report that their practice or healthcare system has a formal system for assessing patients’ end-of-life wishes and goals of care.
Moving forward, as hospitals and health systems, hopefully, work to improve and formalize processes for addressing end-of-life care, it would be worth considering how digital health technologies are helping to bridge those gaps so that patients and their families receive the best care possible.