Improving Palliative Care at Home and Abroad
"All patients should have the best care possible throughout the trajectory of their illness from the point of diagnosis through treatment, through survivorship to the end of life."
It is not unusual to learn that such words came from a physician whose expertise is in oncology and whose interest within that specialty is palliative care. What is unusual — and really fortunate — is how Kavitha Ramchandran, MD, clinical assistant professor of oncology, has sought to improve the patient experience both institutionally and globally.
PathWell Serves Stanford Patients
Ramchandran and her team at Stanford developed PathWell. It is an access hub in the center of 26 spokes, each spoke representing a separate service available to improve all aspects of the health of cancer patients and their families. Many of the spokes are not new; some have been around for many years. Examples of these spokes include the adolescent and young adult program, spiritual care, integrative medicine survivorship, and smoking cessation. What is new is the access hub. It’s a single point of contact so that, as Ramchandran says, “patients and caregivers will know what services are available, and those services can be matched to their specific needs.”
Prior to PathWell, after patients with cancer met with their clinical team it really was up to them to navigate a web of services to help with additional needs such as management of symptoms or psycho-social support. This often occurred when the patients and families’ ability to absorb and adjust to the reality of a serious illness was all that they could handle.
Ramchandran developed PathWell as a solution to this quandary, a way to create unique plans of care suited to each patient and family’s needs. Ramchandran explains: “Being able to understand what those needs are is foundational to cancer care, whether this is a thorough financial assessment, a psychosocial assessment, an understanding of what their spiritual needs are, or what their kids are going through. It is really looking at the whole person outside the lens of his or her disease.”
With the creation of PathWell, the focus for patients can again be on their illness. Likewise, clinicians no longer must refer patients to seven or eight services; now they can make one referral to PathWell. At that point, Ramchandran says, “Our nurse does an assessment of the patient and family and then recommends the additional services that will be most helpful. We then close the loop by talking with the clinician about the assessment and which referrals were placed.”
The leaders of the 26 services come together for PathWell conferences, meetings similar to tumor boards where patients and their care are discussed. The focus of the conference, Ramchandran explains, “is primarily on the psychosocial health and management of the patient, not the management of the patient’s disease.” As a side benefit, the conferences provide an opportunity for different services to learn from one another. For example, Ramchandran mentions a case where one service might be struggling with managing a patient’s pain in part because of co-existing cognitive changes. With PathWell it is simple to ask someone from neuropsychology to conduct an evaluation to figure out what resources the patient needs, which can make the treatment of the pain more feasible.
Ramchandran draws an analogy using some thoughts that Paul Kalanithi, author of When Breath Becomes Air, articulated before his death in 2015. Ramchandran recalls, “He talked about the little p and the big P, with the little p being palliative care as delivered by your primary care doctor and your oncologist, who ask how you are and what your goals are for the day and how your pain is. Big P is that physician saying, ‘I’m a little bit outside my scope and I need some help. I want to make sure your quality of life is as good as possible and I’m going to call the expert to come in and make sure that we’ve got everything that we need for you.’” Big P, she says, “is these 26 organizations working in collaboration. Palliative care is one component and PathWell comprises a very complex and smart group of people who have different skills and are committed to improving the patient experience in different ways.”
Ramchandran’s goal? “In a perfect world,” she says, “every patient will have a PathWell plan of care. It will include certain services that are right for them, and those will be incorporated automatically as they go through their process.”
An Online Course for an International Audience
In addition to this focus on palliative care at Stanford, Ramchandran also enabled people around the world to learn more about the discipline through an online course that she created, Palliative Care Always. An anticipated initial audience of 500 participants ballooned to 1,250 from more than 80 countries, and the course was greeted with considerable enthusiasm. Ramchandran and her team have summarized their work in a variety of settings, including international meetings, foundations and patient forums. Now they are thinking through how the course may impact palliative care in resource-poor settings and how it might influence health care systems in a positive way via novel access to primary palliative care.
“What was profound to me,” says Ramchandran, “was the excitement of a global connection around a shared common experience, thinking about health and wellness and living with dying, connecting with people around the world, having your stories heard, and feeling that there are people who want to share them.”
The course was relaunched in September 2016, incorporating some of the findings from the first iteration. Ramchandran notes, “We will be doing a focus on advanced communications skills and advanced symptom management, as well as a section on support for caregivers and family members, which was lacking in the original course.” The course, which is free, is also being offered for continuing education credits.