Orlando, Fla.—Today, during the Florida Hospice and Palliative Care Association’s (FHPCA) quarterly Board Meeting in Orlando, the Board presented Liz Dudek with the Outstanding Public Service Award in recognition of decades of dedicated public service and her commitment to assuring the highest quality of hospice care for Florida residents. Dudek served as the Secretary for the Agency of Health Care Administration from 2010 through 2016 and held a number of other senior management positions at the agency since it was created in 1992. Dudek currently serves as Director of Healthcare Affairs in the Tallahassee office of the Greenberg Traurig law firm.

FHPCA’s President and CEO Paul Ledford said, “During her decades of public service at AHCA, Liz Dudek has always been an accessible and candid partner to FHPCA and the hospice providers in Florida. During that period, in each regulatory role Liz held, she matched stride with Florida’s hospice providers and played a key role in contributing to what has long been the state with the most comprehensive hospice services offered in the nation.”

FHPCA presents the Outstanding Public Service Award to former public officials who demonstrated excellence in their previous public service roles and contributed to the betterment of hospice care in Florida.

Liz Dudek said, “I sincerely thank the FHPCA for honoring me with this award. In my years as a public servant, the FHPCA and hospice providers were important partners in promoting the highest standards for the industry and were very involved in helping to develop strong regulations, rules and laws to govern the industry. I commend the FHPCA for continuing to help ensure that Florida’s hospice services remain a model for the rest of the nation.”

Following today’s quarterly Board Meeting, FHPCA will hold its 32^nd annual conference, Forum 2017: Hospice Keys, on Thursday, May 25 and Friday, May 26 also in Orlando at the Hyatt Regency Grand Cypress. The annual conference is designed to help hospice clinical professionals unlock the key fundamental practices for providing excellent end of life care.

FHPCA, whose board is comprised of the executives of 41 hospice organizations in Florida, strives to assure excellence in, and expand access to, hospice and palliative care, and advocate for the needs of those in the final phases of life. The vision of the FHPCA is to make Florida the model state for hospice and palliative care services.

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 

In a span of a month, two hurricanes have battered Florida’s coast. Recently, Hurricane Matthew left the Northeast Coast with damaged homes, fallen trees, dangerous flooding, and power outages. Severe weather can come to our doorstep at anytime and that’s why Floridians must prepare –including hospice programs around the state.

Forty-five hospice programs currently serve the state of Florida and each program has had an Emergency Preparedness Plan in place since the 1990s. Hospice programs serve over 127,800 patients in Florida each year.

At Community Hospice of Northeast Florida, staff worked together to safely evacuate their patients, family members, and pets.

“We made sure that each of our approximately 1,200 patients had a plan for their care during and after the storm; enough medicine, medical equipment, and other needed supplies to get them through that period of time,” explained Susan Ponder-Stansel, President and CEO of Community Hospice.

She went on to say, “Our plan worked. The care to our patients and support for their needs did not falter during the storm. The reason we were able to do so well is because of the dedication, professionalism, and tireless work of our staff.”

Another program affected by Hurricane Matthew was Cornerstone Hospice. Leadership at Cornerstone operated from an abundance of caution, remembering that Polk County was hit by three hurricanes in 2004.

Rhonda White, Cornerstone Hospice Chief Operations Officer shared, “We activated our plan a little earlier than normal. We contacted all of our patients, educated them on what was going on in case they weren’t watching the news. We made sure that they had a certain amount of medication and supplies on hand so we didn’t have delivery issues.”

Due to the unpredictable nature of the storm and challenges of navigating curfews set by local officials, safety was a top priority. Some of the programs, like Cornerstone Hospice, cover multiple counties where the watches and warnings were different.

As storms begin to approach the state it’s important to maintain constant communication with patients to verify medications and ensure they evacuate safely. Part of a hospice program’s preparedness plan is the ‘Tuck in Process’, which ensures patients have seven days worth of medication, evacuation plans, alternative power for any medical equipment and assistance to a special needs shelter.

The goal is to make sure each patient has a plan and is safe.

Rhonda White’s team used this process during Hurricane Matthew, “We really wanted to verify medications in the home – how much, how many supplies, those kinds of things. Did they understand how to use their oxygen tanks because that is confusing if you’re not used to transferring over to a tank.”

After the storm, there was a feeling of relief because hospice patients and programs did not suffer any catastrophic impact and staff returned to regular operation this week.

You can’t wait to develop a plan. Being in the midst of a serious weather event demands a concrete emergency plan to be in place. Some hospice patients are cared for at an in-patient facility, but the majority are cared for in homes. For hospices, service areas may cross several counties and requires not only a high level of preparedness but also organization.

The care and safety of patients is always a top priority – even during a severe storm.

To learn more about hospice programs in Florida, check out LetHospiceHelp.org or call the hospice helpline at 800-282-6560.

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 Avow

It was a beautiful day in May when Jessica received the call informing her that her father had succumbed to a fatal heart attack. “Dad” was 77 and apparently suffering from undetected heart disease. The loss came as a surprise to Jessica along with the discovery that her father had never put his affairs in order – a shocking realization considering “Mom” was suffering from advanced dementia.

With Dad gone, caring for Mom would fall to Jessica, the oldest of the couple’s eight children – a nurse by training and one of two siblings living locally. Jessica promptly moved Mom into her home and was ready to become a supportive caregiver – confident that she could handle it since she worked from home and her two grown children were off at college.

Following her father’s death, however, Jessica found herself wading through what seemed to be an insurmountable mound of red tape required to close her parents’ estate. Dad had no will or funeral plan and had not prepared a living will or power of attorney plan for her mother. Jessica did not even know which bank her parents used. At the same time, Jessica was facing the heartbreaking truth that her mom was steeped in dementia and required 24-hour care and supervision – clearly Dad had provided much more support than he ever let on.

In the years leading up to her father’s death, Jessica brought up the topic of getting affairs in order, but most often, her father would dismiss the topic and say, “I’ll get to it.” He never did of course and now Jessica would need to turn to an attorney for help. The process would be long and exhausting and she would spend thousands of dollars in legal fees. Jessica wished she could have spent these funds on enhanced care for her mother who experienced a rapid deterioration from Alzheimer’s disease and eventually required placement in a nursing facility.

Unfortunately, Jessica’s story is not unique and her father’s avoidance of getting his affairs in order is common. For many of us, the idea of illness or death touching our lives is easily avoided or dismissed for attention later¬. Plus, getting your affairs in order is work and often carries some expense. It also requires some serious decision-making and hard conversations.

If “getting your affairs in order” is still on your to-do list, learn from Jessica’s story and move it up in priority. If you have aging parents, find out what plans they’ve made, if any. Don’t let perceived youth delay your actions – accidents and serious illnesses have no age qualifiers.

Need some help getting started? Avow has some free tools available on its website including:

• “My Life Dossier,” a tool designed to help you organize important documents needed in times of emergency or following a death. This resource also walks you through some important considerations to help you prepare for your final life chapter.
• “Living Will Kit” to help you document your advance directives.

Both resources are provided in PDF format and may be downloaded at avowcares.org. To go directly to the resource links visit: http://avowcares.org/docs/living-will-resources

Avow delivers the promise of life by providing comfort, care, understanding and dignity to those who are seriously ill, caring for a frail or sick loved one or mourning someone’s passing. They are knitted into their community, providing supportive services to anyone who needs them, including those whose loved ones were not in our programs. Find out more at avowcares.org

Being the primary caregiver for a loved one can be a rich, rewarding experience. It can also be hugely challenging and draining. While providing 24-hour care to individuals who cannot care for their own basic needs – eating, drinking, using the bathroom and bathing – is more than a full-time job, it is one that more and more Americans are being called upon to take on. Articles recently published in The Journal of the American Medical Association explore the challenges of caregiving. In “Caregiver Burden,” Ronald Adelman, MD, and others note that there are times that caregivers themselves can become an “invisible patient,” lost in the shuffle of care for the chronically ill person being cared for.

Being on call for another person all day and night often leaves little space in the caregiver’s life to provide for his or her own basic needs. “Over time, this can have negative effects on the caregiver: socially, psychologically, and physically.” Though caregivers are frequently overlooked in the care process, momentum has been building in recent years in the community of doctors, social workers, and others, to practice greater awareness of and care for those who are the primary caregivers for their loved ones.

One challenge to this process is the fact that caregiver stress can be a difficult subject to talk about. Precisely because they are caring for a seriously ill loved one, many will prefer not to talk about their own needs. In order to break through this barrier, clinicians and others can help by asking simple questions, such as “How would you describe your quality of life?” or Who gives you help when you need it?”

If the answers to these questions give cause for concern, JAMA provides recommendations for resources that can be useful in caring for caregivers who are struggling under the stress. Resources include links to the CDC, AARP, Caregiver Action Network, and Family Caregiver Alliance. Joanne Lynn, MD, writes about “Strategies to Ease the Burden of Family Caregivers.” Lynn says, “Federal policy has been inattentive to family caregiving,” and she backs up her assertion with clear examples. She notes the work of the VA and the progress it has made in supporting family caregivers.

JAMA also published a piece by Marjorie S. Rosenthal, MD, MPH, who writes about her own personal experience as a caregiver, and issues a call for physicians to practice caregiver-centered care. In her role as a pediatrician, she reflects on the fact that she has often failed to take caregiver needs into consideration when prescribing medication, for example. “When I was a pediatric resident, I barely paid attention to someone’s life outside the office. I prescribed a medication four times a day for a toddler without checking if there was one that could be given twice a day. I gave what I thought was the most highly effective medicine without regard for how difficult it might be to take.”

Over time, Rosenthal has learned to be more aware of the practical needs of her patients and their caregivers, not simply the cut-and-dried medical situation. “I am better now at considering the whole family,” she reflects. Yet, even now, she acknowledges that she struggles to take the full implications of care into account when making medical determinations. She issues an appeal to her fellow physicians, to join her in this work of considering the needs of family and caregivers in all of their clinical decisions. “As we, as a society, dedicate resources to solving [medical mysteries]… I hope we are dedicating resources to assessing how best to help caregivers get the support they need – both social support and within a medical system that considers their high-risk occupation.”

By  VNA of the Treasure Coast

For many caregivers, taking care of a loved one means much more than medication reminders and preparing meals. More arduous tasks such as wound care become part of the responsibilities of the caregiver. In a recent AARP study, more than one-third of caregivers found wound care very challenging and wish they had more training on the subject. The fear of making a mistake and causing infection or pain can be overwhelming and can cause anxiety for caregivers.

If your loved one is recovering from surgery or a hospital stay, it is advisable to ask for in-home care during his or her recovery to relieve the stress and anxiety of the caregiver. However, unless enlisting the help of a private duty agency with twenty-four capabilities, there may be times when the caregiver has to change their loved one’s wound his or herself without the aid of a healthcare professional. Below you will find some general tips and guidelines when it comes to wound care. For specific directions on caring for your loved one’s wound, please consult your physician.

Before changing any wound dressing, be sure that you are working on a clean work surface with sterile instruments and cleansed hands. This will help prevent bacterial infections, impeding the health of the wound. After cleaning the work area, take out any supplies from their packages you might need such as medical tape, gauze, and dressings. Then put on your gloves and proceed to take off the top dressing from the wound.

When removing the top dressing from the wound, you will want to place one hand on the skin and with the other hand, pull the tape off towards the wound. If there is inner packing on the wound, you will want to remove this as well. Ask your physician if special instructions are needed for removing the inner packing. Be sure to put all soiled dressings and gloves in a sealed plastic bag and keep away from children and animals.

When re-packing the wound, be sure to start with a new pair of gloves. If the wound requires inner packing, ask your physician for any special instructions for the inner packing. For the outer dressing, take the gauze by the corners and place over the wound. Use four strips of tape to seal each edge of the gauze.

As a caregiver, you will need to also be aware of any warning signs for infections or complications. It is important to call your doctor if your loved one is experiencing a temperature, chills, poor-smelling fluids or drainage from the wound, swelling or redness around the wound, and increased pain around the wound area.

VNA provides compassionate, innovative care of the highest quality, setting the standard for patients and caregivers needing home health, hospice, and community health services.

www.vnatc.com

by VNA of the Treasure Coast

When a loved one is diagnosed with Chronic Obstructive Pulmonary Disease, (COPD), there are certain things that you, as the caregiver, should know. It is important that you understand the various aspects of this progressive disease so you can ease the responsibility of caregiving for yourself and increase the quality of life for your loved one.

As a caregiver, you should educate yourself about the disease. Learn what changes need to be made to your loved one’s daily life, learn how to prevent infections, and what you need to know about your loved ones treatment options. It is also recommended that you attend physician appointments so you can learn and ask questions that will help you and your loved one.

Nutrition is an important aspect of living with COPD; it is recommended that patients eat small, healthy meals multiple times throughout the day as opposed to one or two large meals a day. Avoiding an overly full stomach will ensure that the heart and lungs will not have to work as hard to digest the food. It is also important to keep your loved one’s body in shape by being active and doing light exercises. Understand that your loved one will have difficulty breathing, so let him or her set a comfortable pace to exercise.

Preventative measures should be taken when you are caring for a patient with COPD. These patients are vulnerable to illnesses and infections and certain steps should be taken to avoid being sick. Do not let your loved one around those who are sick or might be sick. Wash your hands frequently, and be sure to keep your loved one healthy by being inoculated with the flu and pneumonia vaccines. As a caregiver, it will be your responsibility look for signs for infection and be prepared to react in case of an emergency. Warning signs of an infection can include shortness of breath, yellow and/or green mucus, fever, increased fatigue, and wheezing. If you believe that your loved one might have an infection, you should seek medical attention.

As the caregiver, you should understand your loved one’s treatment plan. Learn the various types of medications that he or she is taking and understand the proper use of oxygen if necessary. Be sure to study the appropriate use of oxygen and any safety components that go along with caring for a loved one undergoing oxygen therapy.

VNA provides compassionate, innovative care of the highest quality, setting the standard for patients and caregivers needing home health, hospice, and community health services.

www.vnatc.com

An article published on The New York Times’ blog, New Old Age, explores the experience of caregivers of terminally-ill family members and loved ones. The essay examines not only the stresses that are present during the finals days of the loved one being cared for, but especially on the toll that end-of-life caregiving can have long after the loved one’s death.

“Is there life after caregiving, and if so what is it like?” This is the fundamental question for Judith Graham, who acknowledges that there is “no single answer to this question.” The impact of a loved one’s death varies greatly depending on the emotional temperament and circumstances of the caregiver, and on the relationship with the deceased loved one.

There are, however, some experiences that are common to many end-of-life caregivers, including physical and emotional fatigue, and feelings of guilt following the death. Caregivers explain the stress that can result when they do not have caring resources for their own struggles. Once death occurs, and the intensity of providing care no longer fills every waking moment, the underlying trauma of the experience can emerge with disturbing force. One former caregiver recounts that, following the death of her husband, “All of the emotions I had kept bottled inside came out – all of the sadness and regret over what happened.”

Despite all of the difficulties that family members face when caring for dying loved ones, for many the experience is ultimately rewarding. The opportunity to be present with their spouses, parents or children in the last days of life is something that many would not forgo, despite the grief they must experience.

For many, the experience of being present for the death of another provides a reminder to appreciate the life and health they currently enjoy. One man explains that accompanying his father during his dying days gave him “a glimpse of what lies down the road for me… So now, if I have the ability to go for a run or lift weights or go for a walk outside, I’m not going to take it for granted.”