By Charlene Thurston, ANP, Program Director – from Currents fall 2015

“The secret to the care of the patient is in caring for the patient.” -Francis Peabody

There’s a new phrase in healthcare these days called “whole person care.” Used and promoted by healthcare leaders who hope to transform our healthcare system into one that is more empathic and sensitive to the needs of a person’s mind and spirit as well as to the body and disease, it really just represents good patient care, but care that is too often missing.

Fortunately for those of us who specialize in hospice and palliative care, tending to our patients holistically and extending our services to include their families have always been central to the care we provide. Recognizing that a patient is not just a disease or broken body part to be fixed, but rather a complex human being with emotional, social, and spiritual, as well as physical needs, the interdisciplinary teams of hospice and palliative care programs include nurses, doctors, social workers, counselors, chaplains, and lay volunteers who can help address patients’ needs in a more complete way.

All of the services we offer through our PASCON program are delivered with this core value in mind. Whether patients are coming to us for a brief consultation, attending a group, accessing our caregiver or bereavement services, or are comprehensive care patients that we care for intensively through advancing illness and dying, they can expect us to be available to offer counseling, education, and support to help them cope, as well as care to relieve their pain and other physical symptoms.

We also spend a great deal of time with our patients. Since this depth of care can’t be delivered in the typical fifteen minute visits so common throughout much of healthcare, our visits are often an hour or more to allow patients and families the time they need to discuss their concerns and receive the support that’s warranted in the setting of their choice – office, home, hospital, or nursing home. Many of our patients and families receive over fifty hours of our services through the course of their illness, and all of our care is free of charge.

Much of our work over the past year has been focused on more fully developing our cancer care services, thanks to the funding raised through our Swim Across America event in Nantucket, a charity that’s focused on cancer.

While our PASCON services are available to patients with any life-threatening illness, not just cancer, some of the initiatives that are being developed in the field of cancer survivorship can serve as a great catalyst for transforming healthcare overall. For instance, recognizing the devastating emotional toll that can affect cancer patients and their families, even if the patient’s disease is cured, the Institute of Medicine has created new standards that require all comprehensive cancer centers to include services that address the patient’s and family’s distress, both during and after treatment, and to provide patients with cancer survivorship care plans after treatments have ended, so that they can receive appropriate follow-up for long term effects of their treatment that may develop over the course of their lives. Oncologists are also encouraged to refer their patients to palliative and supportive care early in the course of their disease, since studies show that doing so can help them live better and often even live longer than not having this support during treatment.

While so many people think that palliative care is only used at end of life, the fact is that when started early, even when cancer is curable, it helps patients cope not only better emotionally, but also physically, and helps them tolerate their treatment better. Moreover, since it is well known that stress reduces the immune system’s ability to fight disease, the work done within these programs to reduce stress improves patients’ chances of regaining their health and well-being.

To better appreciate this, consider the case of one of our patients who was so fearful about having chemotherapy that she almost chose not to have it. She’d gone to her first oncology appointment and was so distressed that she came to our office in near panic about the idea of needing chemotherapy. She was immediately able to access our counseling and support, and, after about an hour’s care, felt somewhat less anxious and better educated about what would happen.

Attending our cancer support group a few days later, she received further support and encouragement from other patients who’d gone through chemotherapy. Although still frightened, she felt empowered to make some decisions about her care that better met her needs, and after a few more private and group visits, ultimately completed her series of treatments.

She frequently tells us that without our help, she would never have been able to get through this treatment; that, in fact, she well might not have had it.

Another one of our patients had been diagnosed with an incurable form of cancer several years ago and was told that her prognosis was perhaps no more than two years. She started attending our cancer support group and requested guidance in learning about how to live with the idea of facing death in the not-so-distant future.

Through coaching and guidance over many months, she was able to change her way of looking at life and considering the importance of living her life in a way that was more true to her authentic self. She made many, many changes in her life throughout the next couple of years and felt truly transformed by the experience in a very positive way.

While she has received excellent care by her oncologists and has been on a variety of chemotherapy regimens, she credits the treatments with saving her life and the counseling and support she’s received through our program with enriching it.

While the above discussion focused on care of cancer patients, as mentioned previously, the care of any patient with any diagnosis is provided with the focus on the whole person. Our goal is to reduce patients’ suffering and to strengthen and restore them to a higher level of well-being in which healing may be enhanced.

Often, the coaching and support we provide for family caregivers creates a level of assistance that diminishes the stress they must endure and makes a vital difference in the patient’s and family’s experience, further increasing the opportunity for healing.

So what is whole person care? It is care that recognizes that patients are more than their bodies and their diseases, that recognizes that they are human beings with lives and relationships and that every aspect of their lives is impacted by their illness.

Patients need the good biomedical care focused on curing their disease with technological approaches; but they also need much more. They need another dimension of care focused on helping them adjust to what their disease and its treatments are causing to happen and on how their lives and the lives of people they love are being disrupted by the illness.

As health care providers we must do these two things simultaneously – cure the disease, when cure is possible, and help our patients heal (become whole), whether their disease is curable or not.

Our work at PASCON is to bring this aspect of care to our patients and to add this additional level of care and support to the disease-focused care they’re receiving from other members of their healthcare team. By working together in this way, our hope is that our patients will receive the best care possible.

Funded by the Palliative & Supportive Care of Nantucket Foundation, the Palliative & Supportive Care Program is operated as a department of the Nantucket Cottage Hospital, which is an affiliate of Massachusetts General Hospital, and a member of Partners HealthCare. Palliative & Supportive Care of Nantucket is a specialized health care program dedicated to providing excellent physical, psychological, social, and spiritual care to persons with life-threatening illness and their families.

A Partnership in Caring

Site Map | Contact Us | Privacy Policy | Terms & Conditions | FAQ's