Palliative Medicine: Essential To Quality Cancer Care
Posted on Friday, October 10th, 2014 at 11:07 am by lifemediamatters
Modern cancer care is often not patient-centered, coordinated or evidence-based, said Betty Ferrell, associate director of nursing research with City of Hope National Medical Center in Duarte, Calif. As the baby boomer population ages and costs of unnecessary cancer care rise, Ferrell expects palliative medicine to become more common and accepted by physicians.
Ferrell, an oncology nurse with nearly 35 years experience, presented “Improving Quality Cancer Care: Palliative Care as an Essential Ingredient,” at the second annual Hospice and Palliative Care Symposium, held at the Chicago Botanic Garden. “It is an outrage that many patients are only referred to palliative care in their last days,” she said.
There is estimated to be a 30 percent increase in the number of individuals facing cancer by 2022, with a national cost totaling $175 billion. “The older population is getting older, and older people are living with cancer,” Ferrell said. “People are diagnosed with disease, and we often focus only on the life-prolonging treatments, we don’t focus on palliative care until the end. The best cancer care incorporates palliative care at the beginning.”
Fifty-three percent of cancer diagnoses in 2012 were from individuals 65 and older, according to a new report published by the Institute of Medicine.
Palliative medicine is usually provided to the seriously ill to help treat symptoms and side-effects of disease and aggressive treatments. The goal of palliative care is not cure, but symptom management. “There is growing evidence that people actually live longer with access to palliative medicine,” Ferrell offered.
“Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment,” according to recommendations from the Center to Advance Palliative Care and the American Cancer Society. Because palliative medicine is specialty care most often provided by expert clinicians only when life-prolonging medicines fail, many oncologists overlook it.
To help avoid unnecessary, often aggressive treatments and encourage earlier palliative care referrals, Ferrell recommends open and honest communication between doctors, specialists and patients. “Systems of care have to change,” Ferrell added. ” As the population changes and costs rise, there will not be an option to not have fully integrated palliative care at medical centers.”
A Simple Change? The IOM Report On “Dying In America”
Posted on Thursday, September 18th, 2014 at 8:24 am by lifemediamatters
Say there was a simple change to the health care system that would reduce cost, reduce demand, increase quality of life and satisfaction, address the patient and not just the disease, improve care coordination and increase patient autonomy. This change is possible, but it requires addressing the problem that in America, we do not die in the manner we wish.
The Institute of Medicine released its report this week, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Despite decades of efforts, the report shows that there has not been much change in how we die. We mostly want to die at home, and yet we die in hospitals. We mostly want comfort care, and yet we mostly receive aggressive care. We want our emotional and spiritual needs met, yet physicians are not trained in dealing with them.
The trends in end of life care have changed recently, though not for the better. We tend to move around a lot at the end- between home, long term care facility and hospital. More technical caregiving is done by family members. Although palliative care leads to a higher quality of life, including better understanding and communication, access to home care, emotion and spiritual support and symptom management, physicians rarely refer to such services.
The goal of the report is to create a roadmap examining what steps should be taken in order to make the end of life a better experience. Among its suggestions:
- The system of care needs adjustment to provide for “higher quality, integrated, patient-centered, family-oriented, and consistently accessible around the clock” care. Palliative care can provide this, so more palliative care professionals are needed, along with more (and earlier) referrals. All medical students should receive training in palliative care.
- Increased communication between physicians and patients. At the end of life, most need assistance in making care decisions at a time they are likely surrounded by people they do not know. Thus, the report suggests that advance care planning conversations begin in the teenage years and continue throughout life. These chats should address not only desired care and values, but also spiritual and emotional needs. People should receive assistance in completing advance directives. Health care providers should document these conversations not only in the physician’s office but also in medical records easily accessed from most care locations.
- A change in funding priorities. Whereas most funding to aggressive, last-ditch efforts to keep bodies functioning, health care dollars should fund coordination of care, palliative care-like programs and physician time for conversing on end of life issues. There should be additional fund for POLST programs in all states, creating truly integrated, inter-operational records accessible in all settings.
- Lastly, the report recommends improved and increased public education and engagement to “raise awareness and elevate expectations about care options, the needs of caregivers and the hallmarks of high-quality care” as well as to complete advance care planning conversations and documents.
Ever since Elisabeth Kübler-Ross inconveniently pointed out that Americans have an “avoidance problem” with death, efforts have been taken to improve care for the dying. As this report shows, those efforts are noble and innovative- but not nearly as endemic as they should be for real change allowing more to experience a good death.
“Respecting Choices” Model Coming To South Carolina
Posted on Friday, August 15th, 2014 at 10:04 am by lifemediamatters
This piece was first published in Voices in Bioethics. LMM President Randi Belisomo is a contributor.
The South Carolina Medical Association is now working to follow the lead of physician organizations in Wisconsin, Minnesota, and Virginia, as members plan to implement an early-intervention advance care planning program that has drawn national media attention in recent months.
A product of La Crosse, Wisconsin’s Gundersen Health System, Respecting Choices engages patients in informed discussions about end-of-life decision-making. The paradigm trains non-physician facilitators to guide patients through complex, value-driven considerations within programs staged to individual health. Ninety-six percent of those who die in La Crosse now have advance directives; nationally, 30 percent of adults do. La Crosse has been dubbed in headlines as the “town that talks about death,” and providers across the country now hope their own towns can become the same.
“It was a natural fit, because Respecting Choices is a very physician-friendly organization,” said John Ropp, a family physician serving on the South Carolina Medical Association Board of Trustees. “It makes sense from a clinician standpoint what they’re trying to accomplish.”
Social workers, chaplains and nurses in five South Carolina health systems are expected to begin advance care planning facilitator training in early 2015. The dues-driven association will seek funding from those systems to help finance the estimated $250,000 implementation cost. Funding from private insurers is expected as well.
Members say they realize a physician organization like their own is right to lead such an initiative, and their sponsorship helps remove any perception of conflict of interest.
“It would be really difficult for an insurer or state agency to roll this out, because they would be seen as trying to save money by limiting care,” Ropp said.
Respecting Choices designer and medical ethicist Budd Hammes agrees. “Medical societies stay out of provider competition,” Hammes said. “They represent physicians at all institutions and have clear leadership roles.”
Several medical associations have recently sponsored Respecting Choices initiatives. “Honoring Choices Minnesota” has been the project of the Twin Cities Medical Society since 2010, training 1700 facilitators statewide. Project directors say about 35 percent of Minnesotan adults now have advance directives stored in electronic medical records – a percentage surpassing the national average.
The Wisconsin Medical Society expanded Respecting Choices beyond La Crosse in early 2013, establishing advance care planning pilot sites within six health systems in the Madison-Milwaukee corridor. Three thousand end-of-life conversations have been facilitated in the project’s first year. “Whether it takes ten years or more, we want this to be a routine standard of care,” said John Maycroft, the Wisconsin Medical Society’s director of initiatives. “We may never hit La Crosse numbers, but maybe we can hit 70 or 80 percent.”
This September, the Richmond Academy of Medicine will train 30 Respecting Choices facilitators across three health systems. The Academy voted to back the plan after several members shared concerns about hospice referrals coming too late for patients to realize true benefit. Executive director Deb Love said earlier intervention was considered “more palatable than the current approach- waiting until a crisis develops.”
In South Carolina, it was the Physician Orders for Scope of Treatment (POST) pilot project this spring that exposed association members to the need for earlier advance care planning. POST, similar to an advance directive, is a medical order intended for patients expected to die within one year. “There’s a lot more to it,” Ropp said. “So the question was ‘where do we go next?’”
Facilitators will be trained to speak with patients of all ages and stages of health regarding concerns about end-of-life care and any experiences had with seriously ill loved ones. A Respecting Choices discussion identifies a surrogate decision-maker, someone a patient believes is willing and trustworthy to make medical choices if he or she is unable. Religious and cultural beliefs influencing care choices are also unraveled, and patients often leave facilitations with advance directives completed.
“It’s a way for them to come to their own personal insight about why this is important, what they want to do, and what their values, goals and preferences are based on other experiences,” Hammes said.
Part of the program’s attractiveness, Ropp says, stems from the fact facilitators are non-physicians; they are placed within health systems so busy doctors may refer patients for comprehensive discussions. “Frankly, it’s really hard to have meaningful conversations about this stuff with the time we really have,” he said. “It’s going to take more than doctors to accomplish meaningful things in the community in terms of better end-of-life care.”
Physicians, however, play a crucial role in advance care planning. Ropp believes that doctors nationwide are beginning to realize the value of early end-of-life dialogue and the urgent responsibility they hold to promote it.
“Projects like this really hit at the core values of the physician-patient relationship,” he said. “It involves honest communication, consent and relationships.”
Facing The End Of Life With Laughter
Posted on Sunday, July 13th, 2014 at 8:30 am by lifemediamatters
Jen Bosworth uses comedy to make others comfortable with a not-so-funny subject: death. After serving as her seriously ill mother’s primary caregiver, Bosworth incorporated her experiences into “Why Not Me…Love, Cancer and Jack White.”
She spoke with Life Matters Media about her one-woman show and her upcoming collaboration with Life Matters Media.
What is ‘Why Not Me’ about?
It’s a show about celebrating life, and it’s also about seeing the beauty and tragedy when someone approaches the end of their life. It’s about taking opportunities to talk with our loved ones about it.
I’m a comedian, and the show’s definitely not a bummer– it’s been called a triumph and hysterical. It’s a comedy about cancer, end of life, among other things.
What inspired you to write and perform this show?
I was my mom’s primary caregiver. In 2010, metastatic breast cancer came back and spread into her lungs. I made a conscious decision that I would put my life on hold to be with her and take care of her. During those 18 months, I started writing down my thoughts and feelings, even funny anecdotes we had together. After she passed away in 2011, I had a friend approach me and tell me I needed to make a show.
Three days before my mom passed away, she called me over and she said, ‘Look, I know you’re an artist and I want you to promise me that you’ll pursue that.’ It was sort of her dying wish.
How does it feel honoring your mother through your show?
It feels amazing. My mom was a Colombian immigrant, and she was really direct, assertive and funny. The law around my house growing up was that you do what mom says. I think towards the end of her life she realized I could help people through comedy.
How does the musician Jack White come into the play?
I’m not a huge music buff, I didn’t really even know who the White Stripes or Jack White was. But I began to have these vivid, reoccurring dreams about him. I don’t know how it got implanted.
Now looking back, it was sort of my escape from the hardships and tragedy of what cancer was doing to my mom. It was like a fantasy life that I created at night in my dreams to cope. You know, I’m happily married, I have a wonderful husband, but I started to have this bizarre nocturnal relationship.
I didn’t tell anyone, but now I think it’s important to share because when you go through something horrible there needs to be an escape. His music was my escape.
Once my mom passed, those Jack White dreams stopped. It could have been anybody, it could have been David Hasselhoff from Knight Rider, Paul Newman or Brad Pitt. The show really flatters Jack White, I hope he knows about it.
What inspired you to partner with LMM?
I have strong, warm and passionate feelings for Life Matters Media, and that is why I wanted to partner for the August 1 show. On the local, national and even international level, Life Matters helps get conversations about the end of life started. When I was thinking about working with nonprofits, Life Matters was one of the first organizations I thought of.
Approaching End Of Life Conversations
Posted on Thursday, June 19th, 2014 at 8:22 am by lifemediamatters
As hard as it may be for the physician and the patient, clear and compassionate discussion about choices will serve everyone
This piece was first published in Chicago Medicine (page 24-25). LMM President Randi Belisomo is a contributor.
In medicine, language matters. When a patient is diagnosed with a terminal disease, clarity in communication and word choice can have immeasurable impact on how patients choose to spend their remaining time. Once communicated, the hard-to-say and even harder-to-hear truth can shift the entire focus, or lack thereof, in an examination room. Instead of fielding inquiries about scan results or a research trial, physicians may guide patients and their families to look at a bigger picture, without being caught up in the clinical details.
- Is it time to take the last trip to Florida? Yes.
- Is it time to stop working in order to be together as a family? Yes.
- Is it time to communicate everything that patients have been meaning to share with the kids? Yes.
- What are your patients waiting for? You.
Resolution, reconciliation, and the peace, grace and comfort most of us hope for at our time of death can only come by first acknowledging the reality that death
is taking place. That someone is indeed dying. A recent study reported in the New England Journal of Medicine evaluated patients’ understanding of the goal of their cancer treatment. More than 70% of patients enrolled did not understand that they had incurable disease.
Another study published in the Journal of Clinical Oncology demonstrated that better end-of-life dialogue between doctors and patients results in different care options: those who talk with their doctors about end-of-life care at least one month before they die are more likely to choose therapy that is less aggressive and aimed more at making them feel better. Authors suggested that having such discussions soon after a terminal diagnosis gives patients the time to process the idea that their life is nearing an end. Therefore, they are empowered to make thoughtful, informed decisions about their treatment.
One of the biggest barriers to facilitating quality end-of-life discussions—the kind that lead to patient empowerment in the form of advance directives, finalizing legal and estate plans, creating a family legacy and meaningful use of one’s time—is not always the patient; often, it is the doctor. Even the most experienced and skilled physicians sometimes pause, or avoid the inevitable altogether. Noted physician and author Abraham Verghese wrote, “I had always felt inexpert when a patient was near death. Give me a patient with massive gastric bleeding or ventricular fibrillation and I am a model of efficiency and purpose. Put me at a deathbed, a slow dying, and purpose is what I lack.”
Imagining yourself as the Patient
But a physician’s purpose near death is paramount. Physicians are often uncomfortable delving into a problem they are unable to fix. While doctors may not be able to fix a problem, they have so much positive power in their ability to relieve suffering and provide comfort—actions that could mean everything to dying patients and their families in the most stressful time of their lives. How to do this?
Physicians must put themselves in their patients’ place and allow the time to do it. It may be the third such conversation a doctor has facilitated that day, but it is the first time the patient has ever heard it. It is scary, overwhelming, sad and uncomfortable. But however hard it is for a physician to say, it is most likely the hardest thing a patient has ever had to hear.
Don’t sugarcoat reality. Doctors must tell patients the facts of their condition, because only in knowing can they make a fully informed decision about how best to proceed with whatever time is left.
Euphemisms may be easier to use, but what physicians often say is not what patients may hear. Clear and compassionate language matters.
One of the hardest things for patients and families upon hearing such dire news is that they often interpret it to mean there are no more options available; that there is nothing physicians can do. “No further treatment is available” is the worst thing a patient can hear, and it is not true. Patients and families need something to do, and physicians can provide that in providing a care plan. There is comfort care.
Easing of Pain
Enabling a patient to have the best day possible—that is a true goal of care. But even the greatest medical communicators face plenty of barriers, some obvious and often discussed; patient denial is a common one, as is hope in some “miracle.” But others are more subtle.
Fear of Disappointing
It may seem strange that often in end-of-life cases, patients are afraid to bring up the reality of death because they fear letting down their health care team. Somehow, it would be seen as a failure on their part if they are declining rapidly. In the course of interviewing so many at the end of life, this fear is a reality that comes up time and time again. Physicians are trained to make patients better, and if a patient isn’t getting better, it is disappointing. That patient doesn’t want to bring up what may be perceived as a medical failure. Don’t make the patient address it first—that’s the job of the physician.
This fear of disappointment must be eliminated to enable quality end-of-life care. How can a physician shift from treating symptoms to overall well-being from disease therapy if he or she isn’t receiving the full story from a patient? This fear of disappointment can be lessened by clear language.
- Are you afraid of dying?
- Are you afraid of pain?
- Are you afraid of being alone?
These questions are more likely to lead to comprehensive and attentive care than the common request: “Tell me about your symptoms.”
Fear of Abandonment
That shift to caring for overall well-being instead of treating disease is one that providers must let patients know they do, too. For example, if hospice is the next step, let patients know that not only will they get outstanding comfort, but also if they need to call, they can. At the end of life, everything is seen as a loss. Is this the last time I’m going to see this person? Is this the last time I’m going to venture outdoors? Is this the last time I may enjoy a meal? Don’t allow a patient encounter to feel like it is one more thing that needs to be mourned, one more loss, or one more uncomfortable situation for the patient.
Fear of Isolation
If patients are nearing the end of life but are well enough to be coming back and forth to the doctor’s office, they may feel like a sore thumb. To be the sickest person in the waiting room is terribly lonely. This fear correlates with the fear of disappointing the care team; patients need to know that their physician has cared for patients in their situation, will care for more in the future, and will continue to care for him or her. It is so comforting for a patient to know they are not the only one.
It’s Up to You, the Physician, to Provide this Gift of Compassion
It is practically impossible to provide quality end-of-life care without acknowledging the reason for it. The clear and compassionate truth empowers patients to gain what they want the most in times of tremendous loss. This gift is one only the physician can give, and do so graciously.
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