'Lifelines' in the confusing health care system
Patients want one contact person to help them through the maze. Some hospitals are listening
BY PAMELA FAYERMAN, VANCOUVER SUN FEBRUARY 26, 2011 3:09 AM
Hyperventilating and terrified as never before, single mom Leanne Whitfield composed herself just long enough to deliver the devastating news about her breast cancer diagnosis to her 17-year-old son.
"The blood drained from his face and Zachary said, 'If you die, where will I go?'" she recalls.
"I told him the tumour is small. I had to say, 'I am not going to die.' He couldn't deal with the word 'cancer.' It was hell for him."
It's been said that getting diagnosed with cancer is akin to getting dropped from a plane into enemy territory -without a GPS system, let alone a compass. Like so many newly diagnosed cancer patients, Whitfield felt vulnerable, bewildered, helpless, confused and uncertain about where to turn first as she was drowning in distress.
But soon after her diagnosis last year, she got a phone call that calmed her nerves. It was from nurse Shawna Bond, a patient navigator at Victoria General Hospital.
She was there, she told Whitfield, to help her navigate the labyrinth that is the medical system. She would, she assured Whitfield, explain in plain language, not medical gibberish, the next steps in her cancer journey. She said she'd be Whitfield's advocate and could be counted on for psychosocial support. She'd help steer her towards community resources like support groups and counselling. And she'd provide a wealth of information so Whitfield could manage the myriad challenges that would change her life forever.
SUPPORT SYSTEM
Whitfield came to realize that Bond and the other nurse navigator, Dorothy Yada, would become her "lifelines." They would help move her from a catastrophic mindset to one with some hope that she and her teenage son could grasp.
"Shawna took time to talk to me. She had so much information but I had to ask her to spoon feed it to me because I needed to receive information in swallowable amounts. I've had a lot of personal trauma in my life and I really couldn't hear about the threat of death. Yet I couldn't trust anyone saying you aren't going to die, either," Whitfield says.
"So I had to let these wonderful people help me with my personal agony and fears because if you unzip the wrapper I had around myself you would see a raw, damaged human being."
No matter what the illness, the purpose of navigating patients is to offer not only the best chance for a cure, but to improve their quality of life and overall wellbeing. Indeed, there's growing evidence that patient navigation -usually offered through specialized nurse navigators -is integral to both surviving cancer and thriving afterwards. Studies show that about half of cancer patients suffer depression, anxiety and other mental health problems which, left untreated, may negatively affect not only the course of their disease but their quality of life after they finish treatment.
Evaluations of navigation programs point to overwhelming patient support and satisfaction, better coordination of care, improved patient understanding of disease and treatment, better preparation for medical appointments and better coping mechanisms.
A study on head and neck cancer patients by B.C., Quebec and Nova Scotia researchers in 2009 showed the positive value of adding a nurse navigator to the patient's health care team. Such patients had higher satisfaction and shorter stays in hospital. They had fewer cancer-related symptoms and felt more informed, which meant they were better prepared for appointments.
"This study suggests that nurse specialists such as the patient navigator cannot only play an important role in the continuity of care but also in supportive care by helping patients to cope better with cancer treatments, recovery or cancer progression and death issues," the researchers concluded in their work, published in Seminars in Oncology Nursing.
NEED FOR A 'POINT PERSON'
While their numbers appear to be growing, it is impossible to know how many navigators there are across the country since no such records are kept and there are no professional associations. Indeed, it appears the vast majority of patients -and even health care providers -are not even aware such roles exist. In Quebec, there are about 225 oncology nurses providing navigator services, a number believed to be the highest of any province.
When the Saskatchewan government launched a review of the health care system a few years ago, again and again patients told the commissioner, Tony Dagnone, about their negative experiences. Many of the complaints had to do with patients' inability to navigate the system and the fact that patients wished they had one point of contact.
Although the 2009 For Patients' Sake report focused only on health care within Saskatchewan, the submissions and findings are easily applicable to every community across Canada.
Says Dr. Martin Vogel, president of the Saskatchewan Medical Association: "If the system was more patient-focused, people wouldn't feel like they need a medical degree or PhD to get through it."
A phone survey of 1,100 residents in Saskatchewan showed nearly half agreed with the statement: "The health system is so complex that I worry that if I become ill I will not be able to find the help that I need."
FOCUS ON PATIENTS
Findings like those have made patient navigation an emerging discipline in Canada's health care system.
Still a fledgling field, it nevertheless represents a new paradigm in health care variously called patient-focused or patient-centred care.
In patient-centred care, health professionals in cancer care, for example, do more to acknowledge the fears and anxieties of the person with the disease. They recognize they're working with patients, not just on them. They are treating individuals who need help getting around, and offer more compassion and support for patients' emotional and psychological problems.
"It's really only in the last 10 years that we've become more focused on the patient and not just their treatment," concedes Dr. David Levy, president of the BC Cancer Agency (BCCA).
With medical treatments so varied and complex, most doctors don't have the time to give patients what they need and want. Doctors themselves concede that much. A BCCA report in 2005 found that only 6.5 per cent of doctors were content with coordinating all their patients' care themselves; the vast majority of doctors were receptive to sharing such functions with professional nurse navigators.
The Canadian Partnership Against Cancer has identified patient navigation as a potential solution for disjointed, impersonal cancer care. So too did those involved in the Canadian Strategy for Cancer Control, which is a pan-Canadian effort aimed at finding ways to cope with the burden of nearly 200,000 Canadians being diagnosed with cancer each year.
NAVIGATING THE HEALTH CARE MAZE
A five-part series on the use of patient navigators in Canada
Vancouver Sun reporter Pamela Fayerman spent eight months on this series, visiting 12 cities in five provinces and interviewing dozens of navigators, patients and health system leaders. Research was funded by a $20,000 grant from the Canadian Institutes of Health Research.
TODAY: How the patient navigation movement began, how it works, and the benefits.
MONDAY: Patient navigation in Saskatchewan and in the aboriginal community.
TUESDAY: Navigators at work in Alberta and Manitoba.
WEDNESDAY: New programs throughout B.C.
THURSDAY: The future and how you can be your own best navigator.
ONLINE: Pamela Fayerman explains why this topic was so important to her. Also, a photo gallery of navigators at work.
BENEFITS OF PATIENT NAVIGATION
WHAT THE EVIDENCE SHOWS FOR PATIENTS:
. Better understanding of their disease and treatment plans
. Improved emotional and practical support
. Better able to cope (emotionally, psychologically, physically) with disease
. Improved diagnostic, surgical and other treatment waiting times
. Increased compliance with treatment plan
. Better preparation for medical appointments
. Increased satisfaction with care
. Potential improvement in treatment results
FOR NAVIGATORS AND HEALTH CARE PROVIDERS:
. Rewarding work
. Improved collaboration and communication with others on the health care team
. Seeing health care from the perspective of patients
. Spotting problems and gaps in the health care system and then fixing them
FOR HEALTH CARE SYSTEM:
. More coordination between health providers, hospitals and clinics
. Less duplication of tests
. Lower hospitalization rates
. Potential cost savings through improved patient care and results
. Retention of health care professionals because of job satisfaction
. Higher levels of patient satisfaction
Cook, a nurse, initiated pilot projects in breast cancer navigation. A 2004 formal evaluation report published by Cancer Care Nova Scotia states:
"Results of the Cancer Patient Navigation Evaluation confirm that the program has significantly benefited cancer patients and their families in dealing with the emotional turmoil, informational needs and logistical challenges associated with having cancer. It has resulted in more efficient use of clinical time for physicians and more appropriate use of community health professionals. The program has contributed to overall improvements in the cancer care system itself by addressing problems related to integration, coordination and continuity of care. There is strong evidence to support the implementation of Patient Navigation in the remaining health districts."
The evaluation -the first of its kind in Canada -was based on information from focus groups, one-on-one interviews, 162 patient surveys, and a review of 808 records in the patient navigation database.
It confirmed that nurse navigators had knowledge and awareness of the provincial cancer system, community supports and resources. As a result, the quality and consistency of care grew, as did identification of service gaps. Patients were seen by medical specialists sooner because care was streamlined and coordinated.
"The consistently recognized benefits of navigation for patients and families include: providing emotional support, preparing them for their cancer journey, referrals to appropriate health professionals, increasing their knowledge about cancer, helping with coordinating appointments, referral to community supports, assisting with the logistics of getting to cancer centres and finding sources of funding for medications and supplies," the report states.
"The results show that the patient navigators have become, for many patients and their families, a central contact and this assistance is highly valued."
Cook says navigation has become an essential element of cancer care because there are more treatments than ever to offer patients. With more treatment options, there are more complicated decisions to make and patients need to be highly informed to make choices.
A Canadian study in the Journal of Pain Symptom Management in 1998 showed that for 90 per cent of cancer patients, being well informed about treatments and side effects was important. But only half of patients said they could find such information when they wanted it.
Giving patients more information reduces their confusion and improves their coping strategies, according to Richard Doll, who leads psychosocial research at the BC Cancer Agency, and has authored several published or ongoing studies on navigation.
In a 2007 article in Oncology Exchange, co-authored by Doll, navigators were described as the "point person" for patients and their families. They empower patients and also "humanize" their care, the authors stated.
Cook agrees and says navigation can screen patients for distress signals before any crisis develops.
"The process here begins at the time of diagnosis and goes all the way through to survivorship. We are seeing patients at important critical points like surgery and transition to radiation or cancer recurrence."
Every time there's a transition point, patients are more likely to fall through the cracks," Cook says.
Indeed, a discussion paper in 2001 found that the number of physicians a patient encounters during his or her cancer journey can range from 13 to 97.
"When there is a median of 32 doctors that patients are in contact with, there is a lot of potential for problems," Cook notes.
NEW, UNFOLDING ROLES
Dr. Margaret Fitch, head of oncology nursing and co-leader of the Patient and Family Support program at Toronto's Sunnybrook Hospital, is one of the country's leading experts on navigation.
She acknowledges it is still a "new and unfolding phenomenon", but says it's almost a required service since so many patients complain about how hard it is "to find their way around."
Currently, more navigators are working in the field of breast cancer than anywhere else.
That's attributable to several factors, Cook and Fitch say: women are more vocal than men when it comes to pointing out health system needs and weaknesses; breast cancer advocacy is highly evolved; funding for breast cancer innovations is greater than for other types of cancer; and breast cancer treatment is so complex.
Cook says another reason navigation took root in breast cancer is that women have an insatiable appetite for information.
"Women have really empowered themselves. They want information and they ask for what they need."
National navigation workshops have been held in various locations for the past five years to bring together experts to review the latest evidence
Most provinces have introduced navigation programs and if the positive evidence from research -combined with positive patient feedback -is heeded by health system leaders, navigation will surely expand.
Sun Health Issues Reporter
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