Frequently Asked Hospice Care Questions - Ascension Wisconsin

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Frequently Asked Hospice Care Questions

Considering hospice can be challenging, even if you or a loved one is already a patient. That's why our hospice care team compiled this list of questions by patients and their families. We hope you find it helpful as you consider hospice or if you or a loved one is already a hospice patient.

What is hospice?

What are hospice and palliative care?

Both are part of a full program of support for you or someone you love who is living with a life-limiting illness.

  • Palliative Care (or palliative medicine) – the prevention and relief of suffering by a specialized medical team that focuses on managing symptoms, relieving pain and improving quality of life, whatever the diagnosis.
  • Hospice Care – a form of palliative care. It usually refers to the care of patients with a life expectancy of six months or less. It’s the term used by Medicare and other health organizations to describe the kind of team-based care that focuses on comfort, quality of life, pain and symptom relief.

Who can receive hospice?

Hospice care is appropriate when the following conditions are met:

  • The physician thinks that the patient will live six months or less if the disease runs its normal course.
  • Curative treatments are not working or providing relief to the patient.
  • The patient, family and physician agree and understand that the focus of hospice care is on comfort (pain control and symptom management), not cure.

How is hospice care different from other types of home health care?

  • Comfort vs. Cure – For most home health care providers, the goal is to get the patient well. In hospice, the staff and family recognize that the patient will not get well. They focus on comfort and support, rather than cure.
  • Interdisciplinary Team Approach – All members of the hospice care team—the physicians, nurses, social workers, grief support and spiritual care counselors, aides and volunteers—work together to coordinate care.
  • Family Focus – The focus is on the entire family. The hospice team teaches the family how to be involved in their loved one's care.
  • Grief Support – Hospice support continues when a patient dies. Grief support staff and volunteers maintain contact with the family for at least 13 months after the death of a patient.

What services does hospice provide?

Hospice provides a comprehensive support system using an interdisciplinary team of health care professionals to focus on your needs—medical, spiritual, emotional, and family related. The team focuses on the patient as a whole person as well as the family. All team members work closely with the patient’s personal physician, who continues to direct the medical care. The hospice team members include the following:

  • Patient's Own Attending Physician – Continues as your primary doctor to direct your medical care. The hospice team works with your doctor to provide the medical and supportive services you need. Communication between the hospice team and your doctor is maintained on a regular basis.
  • Medical Director – Serves as a consultant to the team as well as to the patient’s personal physician.
  • Nurses – Provide coordination of all care provided to the patient; are experts in the areas of pain control, symptom management, emotional counseling, teaching and support; arrange for and supervise additional help; assist with obtaining appropriate supplies and equipment.
  • Social Workers – Provide emotional and psychological support for patients and families as needed; explain insurance coverage, explore financial assistance and assist with the use of community resources.
  • Clergy – Available to the patient and family as desired; contact the patient/family’s clergy as needed.
  • Volunteers – Provide companionship; assist with shopping and errands; provide relief for the primary caregiver(s).
  • Home Health Aides – Provide personal care to patients, such as bathing and dressing.
  • Therapists – Occupational, speech, and physical therapies are available to all as needed.
  • Bereavement Counselors – Families and friends can receive bereavement services through the hospice program months after the death of the patient. This assures the family of support through the major holidays and anniversaries during the following year. Learn more about the hospice bereavement program.

Choosing Hospice

Why should we choose hospice?

The decision to choose hospice is a very personal one. It directly involves the patient, family physician and any loved ones that may serve as caregivers. Here are a few things you should consider:

  • The hospice team is the expert in end of life care, just as a cardiologist is the expert in heart care.
  • Hospice’s expertise in palliative, or “comfort” care, assures the patient of state-of-the-art pain control and symptom management.
  • Hospice enables patients to focus on living their remaining days among family and friends.
  • Hospice’s emphasis on family involvement—understanding that everyone’s definition of “family” is unique—helps individuals to support each other during this time of life.

What if my doctor does not mention hospice?

The patient and family should feel free to discuss hospice care at any time with their physician, other health care professionals, clergy or friends. Everyone is urged to prepare Advance Directives that spell out the type of care we want to receive at the end of life.

How will I know when to call hospice?

Take some time to think about what would improve quality of life for you and those closest to you. Here are some questions to consider:

Questions to Ask Your Doctor

  • How do you expect my condition to change in the next year?
  • What symptoms might I experience?
  • How might it change my ability to go about my daily routine or care for myself?
  • What are my options for care?
  • What is the purpose of any treatment I am considering?
  • Will it cure my illness or slow it down?
  • Is the treatment focused on managing my symptoms?
  • How will this treatment affect the length of my life?
  • The quality of that time? Will the treatment make me feel sick?
  • Will it cause my pain to increase or decrease?
  • How will it affect other parts of my body?
  • How have other people responded to this treatment?
  • How long will the treatment continue?
  • How will it affect my ability to care for myself?
  • What other treatment choices could I consider?
  • What do my family/friends need to know about my illness and treatment?
  • What kinds of help might be useful? Home healthcare? Hospice care?

Questions to Ask Yourself

  • What am I most concerned about right now?
  • What about my health is most important right now?
  • What don’t I understand about my illness and treatments?
  • How do my decisions about my care fit with my values and priorities?
  • What about my personal life with family and friends is most important to me?
  • How are symptoms such as pain affecting my daily life?
  • Have I talked with my family, friends and healthcare providers about my wishes?
  • Have I chosen someone to make treatment decisions for me in case I am unable (healthcare surrogate, medical power of attorney)?
  • Have I completed a Durable Power of Attorney for Healthcare to help my family and healthcare providers follow my wishes?
  • What kind of help do I need right now?

Questions to Ask the people Who Care About You

  • What questions do you have about my illness and treatment?
  • What are you worried about right now? What is most important to you right now? What kind of help or support do you need? If you would have to make treatment decisions for me, would you know what I want?
  • How do you feel about making those decisions?

What to Expect

How does hospice care begin?

Typically, hospice care starts as soon as a formal request or a ‘referral’ is made by the patient’s doctor. Often a hospice program representative will make an effort to visit the patient within 48 hours of that referral, providing the visit meets the needs and schedule of the patient and family/primary caregiver. Usually, hospice care is ready to begin within a day or two of the referral. However, in urgent situations, hospice services may begin sooner.

Can I change my mind about hospice?

Yes, hospice is a flexible, patient-centered service for those who want it. Hospice professionals recognize that a hospice program is not for everyone and that people have a right to change their minds. Patients and families can choose to participate in a hospice program or not to continue at any time during the course of the terminal illness.

Should a patient/family already in a hospice program decide that they no longer wish hospice services, they should seek the support and assistance of members of the hospice team in working out necessary medical and insurance changes.

What role does the hospice volunteer serve?

Hospice volunteers are generally available to provide different types of support to patients and their loved ones including running errands, preparing light meals, staying with a patient to give family members a break, and lending emotional support and companionship to patients and family members. The volunteers go through a training program that includes understanding hospice, confidentiality, working with families, listening skills, signs and symptoms of approaching death, loss and grief and bereavement support.

How are emotional and spiritual needs addressed?

Hospice recognizes that people are more than a collection of symptoms. People nearing the end of their lives often face enormous emotional and spiritual distress. They are dismayed as their physical abilities begin to fail. They don't want to be a burden on their families. They worry how their loved ones will manage without them. Sometimes, they feel deep regret about things they have done or said - or things left undone and unsaid.

Hospice professionals and volunteers are trained to be active listeners and to help patients and families work through some of these concerns so that they can find peace and emotional comfort in their final days.

Where do I go for hospice care?

Many people have the impression that “hospice” means hospital – a place to go to get care at the end of life. But that’s not the case. Palliative medicine and hospice care are a philosophy of care – an approach to the care of someone with a life-limiting disease that stresses comfort vs. cure and quality of life for as long as life lasts. Most people prefer staying at home in familiar surroundings.

We provide care wherever it works best for the patients – whether that is a residence, assisted living facility, hospital or skilled nursing facility.

What happens if I cannot stay at home due to my increasing care need and require a different place to stay during my final phase of life?

A growing number of hospice programs have their own hospice facilities or have arrangements with freestanding hospice houses, hospitals or skilled nursing facilities to care for patients who cannot stay where they usually live. These patients may require a different place to live during this phase of their life when they need extra care. However, it is best to find out, well before this level of care may be needed, if insurance or any other payer covers this type of care or if patients/families will be responsible for payment in specific facilities.

If I stay in my home, who will care for me?

The majority of hospice patients live in their own home with the help of a family member, paid caregiver, or friend who serves as the “primary caregiver.” The caregiver, however, is not alone. Nurses, social workers, doctors, volunteers, bereavement counselors and others that comprise the hospice team help the caregiver provide for the patient’s needs and are available to be a resource to assist the caregiver in providing for your needs.

If the patient lives longer than six months, will they be dropped from hospice?

Studies show that patients live longer in hospice care; some patients even stabilize on hospice care and are discharged from services. Patients continue to be eligible for hospice services even if they live beyond the six month period as long as the doctors believe the patient has a terminal illness and a prognosis of 6 months or less. Patients who are discharged from hospice care, either by choice or because their life-limiting disease has stabilized, can return to hospice as needed.

How does hospice work to keep the patient comfortable?

Many patients may have pain and other serious symptoms as illness progresses. Hospice staff receives special training to care for all types of physical and emotional symptoms that cause pain, discomfort and distress. Because keeping the patient comfortable and pain-free is an important part of hospice care, many hospice programs have developed ways to measure how comfortable the patient is during the course of their stay in hospice.

Hospice staff works with the patient’s physician to make sure that medication, therapies, and procedures are designed to achieve the goals outlined in the patient’s care plan. The care plan is reviewed frequently to make sure any changes and new goals are in the plan.

Will I die sooner if I receive morphine for pain relief?

Morphine does not hasten death. It can, however, provide relief from many symptoms that accompany death.

What if I'm not ready to give up?

Hospice recognizes that there is no cure for an illness or condition, but it does not give up on a person. Hospice services include medications and treatments that allow him or her to complete life with dignity and comfort.

What if the patient gets better?

If the patient's condition improves, he or she can be discharged from hospice and return to active treatment. If the patient should later need to return to hospice care, Medicare and most insurance programs allow additional hospice coverage.

Who makes decisions about what is or isn't done for me?

You do. Your choices guide the care you receive. As your needs or goals change, you may find that your decisions about your care change as well. We'll explain your treatment and care options at any given time. We can also help you plan for your care preferences in advance (advance directives) so that if your loved ones need to make decisions for you, they can feel confident that they know your choices.


Do state and federal reviewers inspect and evaluate hospices?

Yes, there are state licensure requirements that must be met by hospice programs in the State of Wisconsin in order for them to deliver care. In addition, hospices must comply with federal regulations in order to be approved for reimbursement under Medicare. Hospices must periodically undergo inspection to be sure they are meeting regulatory standards in order to maintain their license to operate and the certification that permits Medicare reimbursement.

Many hospices have become accredited by the Joint Commission on the Accreditation of Health Organizations or by Community Health Accreditation Program, Inc. (CHAP), to further ensure quality care. In addition, most programs use family satisfaction surveys to get feedback on the performance of their programs.

Does insurance cover hospice care?

Medicare and Medicaid cover hospice care. Many private insurance companies are now including hospice care as a benefit. It is important for you to call your claims agent for specifics about your policy. You might want to ask your claims agent to send you a copy of any materials which outline your benefits. Sometimes explaining your situation to the claims agent is helpful. A hospice team member will help you understand your insurance coverage.

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