WELCOME/GETTING STARTED

FROM OUR PRESIDENT TO YOU—

For more than 35 years, Tidewell Hospice has been honored to offer compassionate, caring service in our community and, on behalf of everyone at Tidewell, I want to thank you for choosing us to assist with the care of your loved one.

We realize that this is a significant time in your life and you probably have many questions. To help you and your family learn about what to expect, we have designed this special guide. It provides information that allows you to understand the physical changes illness may bring, and also serves as a blueprint for managing those changes as a caregiver. As you read this book and interact with our staff, please feel free to ask questions. Knowing what to expect usually makes everyone more confident and better able to communicate at each step along the journey.

Tidewell takes a team approach to care that includes the patient, loved ones, the physician, Tidewell physicians, nurses, social workers, pharmacists, personal care aides, chaplains and volunteers. A nurse visits regularly to guide individual needs. The nurse and certified nursing assistant teach you how to perform simple caregiver tasks easily. In addition to helping with emotional concerns, your social worker can provide information about legal issues and guide you to extensive community resources that may be helpful in your particular situation.

The staff and volunteers of Tidewell teach you many skills. These skills, combined with your love and commitment, ensure the very best care. We strive to meet the physical, emotional and spiritual needs of your loved one, enabling you to do and say the things that mean the most and fulfill important wishes.

Thank you again for choosing Tidewell. If you have a question or need additional information, please feel free to ask your team members or call the telephone number at the front of this guide. It is important to us that you feel confident that support and care are available to you any time, day and night.

Gerry Radford
President and CEO

OUR PROGRAMS

Tidewell Hospice is a local not-for-profit hospice agency that provides a full range of services to patients with advanced illness and their families throughout Manatee, Sarasota, Charlotte and DeSoto counties. Compassionate care and quality-of-life programs are available to anyone with advanced illness who needs and wants hospice care — regardless of age, gender, ethnicity, diagnosis, belief system or financial situation.

TIDEWELL HOSPICE

  • Diagnosis of advanced illness with prognosis of six months or less.
  • Seeking comfort care, relief of pain and symptoms.
  • Support for patient and family wherever the patient resides.
  • Multidisciplinary team: physician, nurse, social worker, pharmacist, chaplain, certified nursing assistant, volunteer.
  • Expert care for people with advanced illness addresses physical, emotional, psychosocial and spiritual needs of patient and family.
  • Medicare/Medicaid, private pay and private insurance accepted — care to all regardless of ability to pay.

TRANSITIONS

  • Must be under the care of a physician and have an advanced, progressive illness with a prognosis of one year or less.
  • Nonmedical and nonemergency service, including community resource management.
  • Support given in form of volunteer companionship, respite and errands.
  • Professional staff oversees case/client needs.
  • Services are provided in Manatee, Sarasota, Charlotte and DeSoto counties.

PALLIATIVE CARE

  • Collaboration between Tidewell Hospice and community health care professionals to provide palliative care.
  • Have a diagnosis of an advanced, progressive illness.
  • Whole person/family care directed at improving quality of life and achieving patient/family goals.
  • Can be combined with therapies to promote life prolongation.
  • Focuses on comfort, pain and symptom management and enhanced quality of life.

APPROVED HOME HEALTH

  • Provides personal care assistance with bathing, shaving, hair and skin care, dental hygiene, morning and evening routines, dressing, incontinent care, transferring in and out of bed.
  • Offers socialization, scheduling of medical appointments and other scheduling, transport to a doctor’s appointment or pharmacy, shopping and running errands, ensures medications are taken safely and on time, offers respite for family members.
  • Provides homemaking services such as preparing nourishing meals, cleaning bathrooms and kitchen, vacuuming and dusting, taking out the trash, washing and ironing, changing linens.

CHILDREN’S SERVICES

  • Hospice for patients under 21 years of age with advanced illness.
  • Developmentally appropriate pain and symptom management, emotional, spiritual and grief support.
  • Interdisciplinary approach of pediatric experts in nursing, counseling and grief support.
  • Care is provided in the child’s home when appropriate.
  • 24-hour-a-day, seven-day-a-week availability.
  • Art, music and play therapies to help children and families express feelings and learn coping skills.

PARTNERS IN CARE (PIC)

  • In partnership with Children’s Medical Services (CMS), this is a Medicaid waiver program for children with advanced illness.
  • Admission criteria include enrollment in CMS and certification by a physician.
  • Tidewell care teams work with primary medical team, family, school, day care to ensure continuity of care.

GRIEF EDUCATION AND SUPPORT CENTER

  • Grief support provided for anyone in the community following the death of a loved one.
  • Grief counseling in one-on-one and group settings.
  • Specialty support groups in the community, such as Survivors of Suicide (SOS).
  • Grief support provided to children and teens that have lost a loved one.

INFORMATION ONLINE

Information specifically for Tidewell Hospice patients and families can be found online at www.Tidewell.org. By clicking on “Patient and Family Resources” you will have access to information about hospice as well as all of Tidewell’s services and training materials.

The three major components of the Patient & Family portal are:

  • An online version of this guide.
  • An interactive Hospice Myths Quiz designed to test your knowledge of hospice.
  • “Let Me Teach You” training materials that guide you when providing daily care for a loved one. Your Tidewell care team can provide the password that allows access to these materials.

Please feel free to share this link with other family members and friends who may be involved with providing care to your loved one.

GETTING STARTED WITH TIDEWELL

Referrals may come from any of the following:

  • Doctor
  • Nurse
  • Social worker
  • Family or friend
  • Patient
  • Clergy

To start the Tidewell admission process, call (941) 894-1777

Where is care provided?

  • In a private home
  • Group home
  • Nursing facility
  • Tidewell Hospice House
  • Hospital
  • Assisted-living facility
  • Anywhere the person lives

Do patients keep their own doctor?

Yes, Tidewell Hospice works directly with the patient’s doctor or Tidewell’s physicians can provide care. The choice is yours.

What happens if the patient moves out of the area?

Tidewell can assist with the transition to a hospice in the area to which you are relocating.

What happens if we no longer want or need Tidewell’s services?

Patients always have the choice to discontinue services by signing a revocation form. If a patient’s condition stabilizes, the Tidewell team will discuss discharge with the patient and family. If you notice changes in the patient’s condition, call us. Tidewell services will always be available when needed.

We value your opinion.

During and after your loved one receives hospice care with Tidewell, you may be asked about your level of satisfaction with our services. We appreciate your honest feedback. It is the best way for us to measure the quality of our programs and uncover areas for improvement.

GETTING STARTED WITH TIDEWELL

Referrals may come from any of the following:

  • Doctor
  • Nurse
  • Social Worker
  • Label Family or friend
  • Patient
  • Clergy

To start the Tidewell admission process, call (941) 894-1777

Where is care provided?

  • In a private home
  • Group home
  • Nursing facility
  • Tidewell Hospice House
  • Hospital
  • Assisted-living facility
  • Anywhere the person lives

Do patients keep their own doctor?

Yes, Tidewell Hospice works directly with the patient’s doctor or Tidewell’s physicians can provide care. The choice is yours.

What happens if the patient moves out of the area?

Tidewell can assist with the transition to a hospice in the area to which you are relocating.

What happens if we no longer want or need Tidewell’s services?

Patients always have the choice to discontinue services by signing a revocation form. If a patient’s condition stabilizes, the Tidewell team will discuss discharge with the patient and family. If you notice changes in the patient’s condition, call us. Tidewell services will always be available when needed.

We value your opinion.

During and after your loved one receives hospice care with Tidewell, you may be asked about your level of satisfaction with our services. We appreciate your honest feedback. It is the best way for us to measure the quality of our programs and uncover areas for improvement.

PERSONAL INFORMATION AND RECORDS

General recommendations:

  • Make a list of the patient’s assets.
  • Make copies of all important documents. Keep the originals in a safe, fire proof, locked place.
  • Make sure there is more than one key and that the family knows where the key is kept.
  • Label any other keys for the benefit of those handling affairs later on.
  • Refer questions regarding the person’s estate to an attorney.

HEALTH CARE ADVANCE DIRECTIVES

The Patient’s Right to Decide

Every competent adult has the right to make decisions concerning his or her own health, including the right to choose or refuse medical treatment.

When a person becomes unable to make decisions due to a physical or mental change, such as being in a coma or developing dementia (like Alzheimer’s disease), he or she is considered incapacitated. To make sure that an incapacitated person’s decisions about health care will still be respected, the Florida legislature enacted legislation pertaining to health care advance directives (Chapter 765, Florida Statutes). The law recognizes the right of a competent adult to make an advance directive instructing his or her physician to provide, withhold, or withdraw life-prolonging procedures; to designate another individual to make treatment decisions if the person becomes unable to make his or her own decisions; and/or to indicate the desire to make an anatomical donation after death.

By law, hospitals, nursing homes, home health agencies, hospices and health maintenance organizations (HMOs) are required to provide their patients with written information concerning health care advance directives. The state rules that require this include 58A-2.0232, 59A-3.254, 59A-4.1 06, 59A-8.0245, and 59A-12.013, Florida Administrative Code.

Tidewell Hospice does not require that patients have a health care advance directive or a do not resuscitate order (DNRO). In the absence of an advance directive or a designated surrogate decision maker per FL Statute 765.401, a judicially appointed guardian or the closest next of kin may act as the proxy decision maker. In the absence of a DNRO, Tidewell Hospice staff can assist in obtaining one. If the patient or surrogate decision maker chooses not to complete a DNRO, 9-1-1 may be called and emergency measures may be initiated if the patient goes into cardiac/respiratory arrest.

QUESTIONS ABOUT HEALTH CARE ADVANCE DIRECTIVES

What is an advance directive?

It is a written or oral statement about how someone wants medical decisions made should he or she not be able to make them and/or it can express wishes to make an anatomical donation after death. Some people make advance directives when they are diagnosed with a life-threatening illness. Others put their wishes in writing while they are healthy, often as part of their estate planning.

Examples of advance directives are:

  • Living will
  • Health care surrogate designation
  • An anatomical donation
  • Do not resuscitate

Someone might choose to complete one or more of these advance directives.

What is a living will?

It is a written or oral statement of the kind of medical care a person wants or does not want if he or she becomes unable to make his or her own decisions. It is called a living will because it takes effect while the person is still living. A patient may wish to speak to a health care provider or attorney to be certain he or she has completed the living will in a way that the wishes will be understood.

What is a health care surrogate designation?

It is a document naming another person as the representative to make medical decisions for someone if he or she is unable to make them. The document can include instructions about any treatment the person wants or does not want, similar to a living will. It can also designate an alternate surrogate.

Which is best?

Depending on the individual’s needs, he or she may wish to complete one or more of the types of advance directives.

What is a do not resuscitate order?

A DNRO identifies people who do not wish to be resuscitated from respiratory or cardiac arrest. The prehospital DNRO is a specific yellow form available from the Florida Department of Health (DOH).

What is an anatomical donation?

It is a document that indicates a person’s wish to donate, at death, all or part of his or her body. This can be an organ and tissue donation to persons in need or donation of the body for training of health care workers. The person can indicate his or her choice to be an organ donor by designating it on a driver’s license or state identification card, signing a uniform donor form or expressing a wish in a living will.

Is a person required to have an advance directive under Florida law?

No, there is no legal requirement to complete an advance directive. However, if a person has not made an advance directive, decisions about health care or an anatomical donation may be made by a court-appointed guardian, the spouse, adult child, parent, adult sibling, adult relative or a close friend.

The person making decisions may or may not be aware of the person’s wishes. Advance directives should be discussed with the significant people in a person’s life to make sure the wishes are carried out as the person wants.

Must an attorney prepare the advance directive?

Advance directive procedures are simple and do not require an attorney, though a person may choose to consult one.

However, an advance directive, whether it is a written document or an oral statement, needs to be witnessed by two individuals. At least one of the witnesses cannot be a spouse or a blood relative.

Where are advance directive forms found?

Florida law provides a sample of each of the following forms: a living will, a health care surrogate, and an anatomical donation.

Can advance directives be changed?

Yes, a person may change or cancel an advance directive at any time. Any changes should be written, signed and dated. However, an advance directive can also be changed by oral statement; physical destruction of the advance directive; or by writing a new advance directive.

If a person changes his or her mind about being an organ donor, his or her driver’s license or state identification can be revised by contacting the nearest driver’s license office to cancel the donor designation, and a new license or card will be issued.

Are advance directives from another state valid in Florida?

An advance directive completed in another state, as described in that state’s law, can be honored in Florida.

What should be done with an advance directive?

If the directive designates a health care surrogate and an alternate surrogate, be sure to ask them if they agree to take this responsibility; discuss how matters should be handled and give them a copy of the document.

Make sure that the health care provider, attorney and the significant people in the person’s life know that he or she has an advance directive and where it is located and perhaps give them a copy.

Set up a file for keeping a copy of the advance directive (and other important paperwork). Original papers may be kept in a bank safety deposit box, but keep copies at the person’s residence or share the location of the safety deposit box.

If the advance directive is changed, make sure the health care provider, attorney and the significant people have the latest copy.

Questions about advance directives can be discussed with a health care provider, attorney or the significant people in the person’s life.

More Information on Health Care Advance Directives

Before making a decision about advance directives, your loved one might want to consider additional options and other sources of information including the following:

  • As an alternative to a health care surrogate, or in addition to, he or she might want to designate a durable power of attorney. Through a written document, your loved one can name another person to act on his or her behalf. It is similar to a health care surrogate, but the person can be designated to perform a variety of activities (financial, legal, medical, etc.). Please consult an attorney for further information or read Chapter 709, Florida Statutes.
  • If someone is chosen as durable power of attorney, be sure that person has agreed to take this responsibility. That person should how your loved one would like matters handled and have a copy of the document.
  • A person who is terminally ill or is in a persistent vegetative state may want to consider having a prehospital Do Not Resuscitate Order (DNRO). An attorney, health care provider or an ambulance service may have copies of a DNRO available. A legal representative and physician sign the DNRO form. More information is available at www.doh.state.fl.us or www.Myflorida.com (type DNRO in these website search engines) or call (850) 245-4440.
  • When a person is admitted to a hospital, the prehospital DNRO may be used or the hospital may have its own form and procedure for documenting a Do Not Resuscitate Order.
  • If a person chooses to donate his or her body for medical training and research, the donation will be coordinated by the Anatomical Board of the State of Florida. The person’s survivors must make arrangements with a local funeral home and pay for a preliminary embalming and transportation of the body to the Anatomical Board located in Gainesville. After being used for medical education or research, the body is usually cremated. The cremains are returned to the loved ones if requested at the time of donation, or the Anatomical Board will spread the cremains over the Gulf of Mexico. For further information contact the Anatomical Board of the State of Florida at (800) 628-2594 or www.med.ufl. edu/anatbd.
  • More information about organ and tissue donation can be found on the Agency for Health Care Administration’s website http://ahca.MyFiorida.com (Click on “Site Map” then scroll down to “Organ Donors”) or the federal government site www.OrganDonor.gov. A health care provider can answer additional questions.
  • Various organizations also make advance directive forms available, including BegintheConversation. org, Five Wishes and Aging with Dignity at www.AgingWithDignity.org or (888) 594-7437.

Other resources:

American Association of Retired Persons (AARP), www.aarp.org (type “advance directives” in the website’s search engine.)

Hospitals, nursing homes, hospice, home health agencies, attorneys or health care provider may be able to assist with forms or further information.

End of Life Issues brochure, www.FloridaHealthFinder.gov (888) 419-3456