October is breast cancer awareness month, and FHPCA wants to remind women everywhere to get tested early. The American Cancer Society recommends that all women over the age of 40 get an annual mammogram and a clinical physical examination. For more information about breast cancer, visit the American Cancer Society’s website.

If you have lost a loved one and would like to speak to someone, contact your local hospice program. Hospice offers community support groups, sometimes specific to diseases like canc
er, that are free and open to the public. Your loved one did not have to receive hospice care in order to attend these support groups. Find your local hospice by visiting our Find-a-Provider page.

Also see: Breast Cancer Facts & Figures 

The attacks that occurred in Orlando this past weekend brought a sense of hopelessness and deep sorrow to communities across Florida. How can people deal with grief during this difficult time? At the Florida Hospice & Palliative Care Association, we want people to know they  can turn to our hospice providers for bereavement support. In a recent interview, Community Hospice of Northeast Florida explains the help grief programs provide to those individuals impacted by the tragedy in Orlando.

Click here for to watch the full story on Community Hospice of Northeast Florida’s Grief Counseling.

Charles Suggs lII, MD Medical Director of Gulfside Hospice & Pasco Palliative Care

So you have heard about palliative care, but are unsure of what it is. Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious and chronic illnesses. It focuses on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.

Palliative care is provided by a team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness. Plus, it can be provided along with curative treatment.

If you are considering looking into palliative care but need to know more, below is some information that can help you to decide if palliative care is right for you. There are many benefits of palliative care (comfort care) for both patients and their families.

Pain and symptom control: The palliative care team identifies sources of pain and discomfort. These may include problems with breathing, fatigue, depression, bowel/bladder or insomnia. The team will provide treatments that can offer relief, including medication, along with massage therapy or relaxation techniques.

Communication and coordination: Palliative care teams are extremely good communicators. They put great importance on communication between you, your family and your doctors in order to ensure that your needs are fully met. These include establishing goals for your care, help with decision-making and coordination of care. Palliative care teams also can help families develop advance care plans, including healthcare directives.

Emotional support: Palliative care focuses on the entire person, not just the illness. The team members caring for you will address any social, psychological, emotional or spiritual needs. During the initial consult, the palliative care team member goalis improve patient satisfaction.

Family/caregiver support: Caregivers bear a great deal of stress too, so the palliative care team supports them as well. This focused attention helps ease some of the strain and can help you with your decision-making.

How do I know if palliative care is right for me? Palliative care may be right for you if you are experiencing pain, stress and other symptoms due to a serious illness. Serious illnesses include but are not limited to: cancer, cardiac disease, respiratory disease, kidney failure, Alzheimer’s, AIDS, amyotrophic lateral sclerosis (ALS) and multiple sclerosis. Palliative care is appropriate at any stage of a serious illness and you can get it along with treatment meant to cure you.

Other signs that palliative care may be helpful for you include: frequent ER visits or hospital admissions for the same condition, functional or cognitive decline, weight loss, increased safety and behavioral concerns, caregiver stress, chronic home oxygen use or limited social and home resources and service support.
Will my insurance cover palliative care? Most insurance plans cover all or part of the palliative care treatment you receive, just as with other hospital and medical services. This is also true of Medicare and Medicaid. If costs concern you, a social worker or financial consultant from the palliative care team can help you with payment options.

Do I have to give up my own doctor? The palliative care team provides an extra layer of support and works in partnership with your primary doctor. Your primary doctor will continue to direct your care and play an active role in your treatment.

Can I have curative treatment together with palliative care? Absolutely. Your treatment choices are up to you. You can get palliative care at the same time as treatment meant to cure you.

Where is palliative care provided? Palliative care can be provided in a number of places. These include hospitals, outpatient clinics, long-term-care facilities or home.

By VNA of the Treasure Coast

If you had to make a healthcare decision for a seriously-ill loved one, would you be prepared to do so? Could you tell a doctor, decisively, how much information to share with your loved one about her/his condition? Would you know whether or not your loved one wanted aggressive care to prolong her/his life? Consider the following fact: There is a clear contrast between our desire to discuss end-of life care and our willingness to actually do so. In fact, 90% of people say that talking with their loved ones about end-of-life care is important, but only 27% have actually done so. While 80% of people say that if seriously ill, they would want to talk to their doctor about end-of-life care, but only 7% report having had an end-of-life conversation with their doctor.

Fortunately, there is a straightforward solution to this disconnect — a simple plan exists to help facilitate such conversations in your community through a grassroots effort called The Conversation Project. An initiative started in 2010 by Pulitzer Prize-winning author Ellen Goodman and a group of concerned colleagues who wanted to share stories of “good deaths” and “bad deaths” within their own circle of loved ones, The Conversation Project has now spread throughout communities across the United States, encouraging people at all stages of life to begin thinking about end-of-life conversations. At the core of the concept is a “Conversation Starter Kit” to help people think through their desires for end-of-life care, put those thoughts in writing and make their wishes known to family, friends and healthcare providers.

VNA of the Treasure Coast, located in Indian River County, forged a plan to implement the grassroots effort in their own community this past March. The Conversation Project in Indian River County launched during spring 2015. Collaboration with community partners was vitally important to reach the diverse population making up the county. Fortunately, the VNA received positive feedback and letters of support from many community organizations, and in March of 2015, the organization held a Conversation Project kickoff meeting, which was attended by forty local health and human service providers and community advocates the VNA hopes will champion the cause.

The idea for bringing The Conversation Project to Indian River County came from VNA President & CEO Mary Linn Hamilton, who has seen the project work successfully in other states. “Having caring, open, compassionate discussions about end-of-life issues is the key to ensuring your wishes are honored,” said Mary Linn, “but starting those conversations can be very difficult. We’re dedicated to helping our friends and neighbors begin their own conversations so they can make their wishes known.”

Advanced directives are not only for those who are close to receiving end-of-life care. Children, parents, sisters, brothers, wives and husbands of all ages should have an idea of the care they would like to receive at the end of their life, expected or not. Ideally, everyone should be able to rest assured that someone close to them is aware of their wishes when the time to make end-of-life decisions comes. Have you had a conversation with those closest to you about your end-of-life wishes? If not, what is stopping you? For more tips and more information on how to begin end-of-life conversations with your loved ones, contact your local hospice organization.

The VNA was founded over thirty-five years ago with the distinct mission of fulfilling the need to provide homecare for local residents of Indian River County.

Visit them online at www.vnatc.com

Whether you’re saving up for a large purchase or training for a triathlon, you have to envision your goals well in advance, and then take small steps to reach them. To be successful, you need to have a plan.

But when it comes to planning for future health care needs, especially how we want to live if faced with a serious or life-limiting illness, statistics show Americans are not nearly as inclined to create a plan and put their wishes in writing. Nationwide adoption of advance care plans, which may include documents such as living wills and health care surrogate designations, sits between 16 and 30 percent.

The conversation itself is a challenge for most people to think about, on a topic very few of us want to ponder at the dinner table.

When health care providers and loved ones understand the kind of care you want or don’t want, they’re much more likely to follow your wishes, especially in situations where you can’t speak for yourself. Advance care plans give health providers tools to create a plan of care that meets both treatment and quality-of-life goals, and family members can be confident knowing they are honoring their loved one’s wishes.

Jamie Buller, LCSW, ACHP-SW, director of advance care planning, Community Hospice of Northeast Florida

Despite these proven benefits, what’s behind the reluctance to plan?

Nearly 25 years ago, Gundersen Health System in La Crosse, Wis. began a journey to find an answer and change the way people approach planning. Gundersen served as catalyst for the creation of an integrated systems approach, across its community’s major health organizations, to establish advance care planning as the routine standard of care for all. They did it with trained staff guiding conversations—not just at one point in time, but over years and decades, spanning life’s milestones and transitions.

More than a decade after launching their program, Respecting Choices®, Gundersen researchers observed that 90 percent of La Crosse-area residents who died had an advance directive. Ninety-nine percent of these residents had it in their medical record at the time of death¹. Subsequently, the evidence-based Respecting Choices model has spread to more than 80 communities and organizations nationwide, with several similar initiatives under way overseas.

Now that successful model has come to the Sunshine State through the efforts of a Jacksonville-based palliative and hospice care provider.

Community Hospice of Northeast Florida established Honoring Choices Florida® in 2013, to encourage people to discuss, decide and document which treatments they would choose in the event of chronic or life-limiting illness or injury. The program is a community-based collaborative, in partnership with six major First Coast health systems and other community-based organizations, which have implemented the planning process with targeted groups such as patients and employees.

Like Respecting Choices, the program uses trained facilitators—more than 130 health care workers and volunteers—to navigate often challenging conversations and document wishes in a written, portable plan. A plan that lives and changes, as its owners do.

These conversations help individuals and families better understand and make informed decisions about use of life-sustaining treatments, such as CPR, mechanical ventilation and antibiotics. They also give people a chance to identify health care surrogates, individuals who can speak on their behalf and advocate for their wishes.

“Honoring Choices Florida sheds light on a philosophy of care that many do not consider until they are already in the midst of a health crisis,” said Jamie Buller, director of advance care planning at Community Hospice. “Creating the opportunity to have the advance care planning conversation is an investment in you and your loved ones’ future quality of life.”

Lawmakers in Washington also recognize the value of these conversations. In June, Senators Mark Warner (D-Va.) and Johnny Isakson (R-Ga.) proposed the creation of a Medicare benefit, Planning Services, to encourage health providers to facilitate care planning discussions for people with advanced illness. Provisions of their bill, the Care Planning Act of 2015, also would provide funding to increase public awareness of the importance of advance care planning.

As Congress and Medicare work together to encourage Americans to create a plan, Buller said Honoring Choices Florida should serve as a case study for similar efforts, right here in Florida.

“We believe that Northeast Florida can be a statewide model for advance care planning and end-of-life care,” Buller said. “As we continue to expand the support services behind Honoring Choices Florida, our hope is that more individuals and families will understand the positive effect these conversations can have on quality of life. It is one of the greatest acts of caring someone can demonstrate for their loved ones.”

Learn more about Honoring Choices Florida at HonoringChoicesFL.com.

Reference:

1              Hammes, B. J., Rooney, B. L. and Gundrum, J. D. (2010), A Comparative, Retrospective, Observational Study of the Prevalence, Availability, and Specificity of Advance Care Plans in a County that Implemented an Advance Care Planning Microsystem. Journal of the American Geriatrics Society, 58: 1249–1255. doi: 10.1111/j.1532-5415.2010.02956.x

By Paul Ledford, President & CEO, FHPCA

In 2010, Florida Hospice & Palliative Care Association adopted a position in opposition to physician-assisted suicide. It is our commitment to the value of life and to the optimization of the quality of life for all people at the end of life, that keeps us from supporting such legislation in Florida. An appropriate plan of care, commitment of hospice staff and family, and proper documentation of the patient’s care wishes should allow for a dying loved one to receive the end-of-life care needed that allows for dignity, quality, and respect.

We support the advancement of practical tools like the Physician Orders of Life Sustaining Treatment (POLST) and believe this type of physician documentation of a patient’s care wishes is a vital step towards ensuring that a patient’s wishes are honored, and unfortunate situations, such as Barbara Mancini experience with her father, do not occur. Receiving quality end of life care is not just a matter of having the right documents in place, but also about receiving quality care early enough to make a difference. Hospice care can begin when a loved one has a life expectancy of 6 months or less, if the disease runs its normal course. The sooner a patient is enrolled in hospice care after diagnosis, the sooner a terminally ill patient can begin receiving quality palliative, psychosocial, spiritual, and emotional care. This care involves intensive case management, nurse, social worker, chaplain, and CNA visits, assistance from volunteers, and may include a variety of ancillary services that improve quality of life, such a music and other therapies. It is not uncommon for patients to quickly show improvement from the ravages of a disease given the quality of care they are receiving. Research shows that many patients actually live longer and have a better quality of life under hospice care than they would have pursuing aggressive acute care.

We believe that life, no matter in what state, is valuable and hospices in Florida strive everyday to ensure that end of life patients are free from pain and can live their remaining days with dignity surrounded by those they love. Every day is a gift.

Watch 60 Minute’s “Ending Life“

Despite recent gains in public awareness of the need for advance care planning,  studies indicate that most Americans have not exercised their right to make decisions about their healthcare in the event that they cannot speak for themselves.

The National Healthcare Decisions Day, April 16, will help Americans understand that making future healthcare decisions includes much more than deciding what care they would or would not want; it starts with expressing preferences, clarifying values, identifying care preferences and selecting an agent to express healthcare decisions if patients are unable to speak for themselves. The National Healthcare Decisions Day (NHDD) initiative is a collaborative effort of national, state and community organizations committed to ensuring that all adults with decision-making capacity in the United States have the information and opportunity to communicate and document their healthcare decisions.

Visit our Advance Directives page or go to NHDD website to download your advance directive today.