What is Hospice Care?

Hospice is not a place.  It’s a concept of care. The majority of hospice care is provided in the patient’s home, the home of a loved one, or in a contracted nursing home or assisted living facility.  Specially trained medical professionals deliver the care. Their goal is to reduce the patient’s pain and control their symptoms, resulting in improved quality of remaining life. Hospice care also includes support for the emotional and spiritual needs of the patient and their loved ones.

Some of the ways that hospice is different from standard medical care are:

  • Hospice looks at all the patient’s and family’s needs. A coordinated team of hospice professionals, assisted by volunteers, works to meet the patient’s and family’s emotional and spiritual needs, as well as the patient’s physical needs.
  • The emphasis is on controlling pain and symptoms through the most advanced techniques available and on emotional and spiritual support tailored to the needs of the patient and family.
  • Hospice recognizes that a serious illness affects the entire family as well as the person who is ill. The family, not just the patient, is the “unit of care” for hospice professionals. Sometimes other family members actually need more attention than the patient.
Who is eligible for Hospice Care?

The patient’s physician and the hospice’s Medical Director must certify that the patient has a life-limiting illness with a life expectancy of six months or less should the disease run its normal course. The patient chooses to receive comfort care for pain and symptom management rather than curative treatment and agrees with the philosophy of allowing death to occur naturally without extraordinary intervention. The patient will make arrangements for a capable caregiver, and reside in the geographic area served by the desired hospice.

When should patients and families consider Hospice?

Now is the best time to learn more about hospice and ask questions about what to expect from hospice services.  Although end-of-life care may be difficult to discuss, it is best for family members to share their wishes long before it becomes a concern.  This can greatly reduce stress when the time for hospice is needed.  By having these discussions in advance, patients are not forced into uncomfortable situations.  Instead, patients can make an educated decision that includes the advice and input of family members and loved ones.  A patient does not have to be critically ill or bed-bound to be admitted to hospice.  A hospice representative would be happy to talk with you or your family about the hospice option.

Typically, hospice care starts as soon as a formal request or a ‘referral’ is made by the patient’s doctor after a diagnosis of a life-limiting illness.  Our hospice program representative will schedule a visit that 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 the day of the referral.

What services does Hospice provide?

Hospice includes the services of an interdisciplinary team of health care professionals:

  • Physicians (the patient’s own physician and the hospice physicians, who are specialist in controlling pain and other symptoms of serious illness) prescribe medications and other methods of pain and symptom control.
  • Nurses are experts at maintaining patient comfort. They assess the patient frequently and help family members provide the necessary support.
  • Certified nurse assistants and home health aides provide personal care and help the patient and family with activities of daily living. They also provide companionship and valuable emotional support.
  • Social workers coordinate community resources and help the patient and family with non-medical concerns. They can help family members mend damaged relationships, plan for the future and ease other emotional difficulties.
  • Chaplains and spiritual counselors help patients and families cope with spiritual questions and concerns at the end of life, either directly or by coordinating services with the patient’s and family’s spiritual advisors.
  • Bereavement coordinators help patients and families deal with grief. Grief support services continue for at least one year after the death of a hospice patient.
  • Volunteers provide companionship and emotional support and offer help in myriad ways.
  • Hospice also provides medications, medical equipment and supplies necessary to promote comfort at home or in other hospice settings.
  • Hospice staff are available by phone at all times, 24 hours a day, 365 days a year.
Doesn’t accepting Hospice mean giving up hope?

Not at all!  Hospice joins with the patient and family to renew hope that the last, precious days of life will be of the highest quality possible, in the comfort of familiar surroundings and supported by family, love and unsurpassed care.  Choosing hospice means adding life to days, rather than adding days to life.  Hospice care allows the patient and their loved ones to refocus their energy and attention away from spending precious time in hospitals and doctor’s offices undergoing treatments to spending that time as quality time, together at home, enjoying the remaining days.

With the help and support of a knowledgeable and compassionate care team, some patients even improve to the point they are able to discontinue hospice services and seek curative treatment.

Who pays for Hospice care?

The cost of hospice care is paid by Medicare, Medicaid, and many private insurance plans, with few out-of-pocket expenses for the patient.  Hospice care can be provided in an extended care setting such as a nursing home or assisted living facility.  The cost of hospice care is covered under the patient’s hospice benefit plan, while room and board charges continue to be paid by Medicaid, private insurance, or private pay.

Expenses that are covered as part of hospice care include:

  • Nursing visits and nurse availability 24 hours, 7 days a week
  • Home health aide visits
  • Physician services
  • Medications for pain and symptom control related to the life-limiting diagnosis
  • Medical equipment needed for appropriate hospice care
  • Therapy, as appropriate
  • Spiritual and grief support care
  • For short-term pain or symptom management, continuous care at the patient’s residence or general inpatient care
  • Respite care at a local nursing facility
  • Family support by a qualified, licensed social worker
  • Volunteer support from a team of trained, caring individuals

Thanks to the generous support of donors and volunteers in our community, Hospice Care of Middletown does not turn anyone away due to the inability to pay for hospice services.

Where is Hospice care provided?

Hospice care is provided in the patient’s home; in a long-term care facility or assisted living facility if the patient resides there; or a hospice inpatient facility if the patient’s condition necessitates inpatient facility care.

Hospice Care of Middletown offers all of the benefits of hospice care to residents staying in a residential care facility, assisted living facility, intermediate care or skilled nursing facility. Hospice staff members provide instruction to the resident, his or her family, and the facility staff to ensure the resident’s comfort. Hospice care complements services provided by senior living home staff by providing additional nurses, home health aides, social workers, spiritual care and volunteer services. Hospice team members attend care planning meetings at the senior living home to coordinate the plan of care with the staff and family.  However, when hospice care is provided in a nursing facility or assisted living facility, the hospice benefit does not pay for the facility’s daily Room & Board for the patient.

Can I live alone and receive Hospice care?

A patient may live alone as long as they can safely care for themselves, and have immediate access to a capable caregiver if and when they need assistance to safely care for themselves.

What if I want to drive and I’m not ready to be homebound?

You can. To qualify for Hospice you DO NOT have to be homebound. We want you to live your life to the fullest. We encourage our patients to go out and do what they feel up to, and what brings them joy. We will even try to facilitate your activities.

What if I travel to another city or state — a family event or vacation, to visit someone, or to a place that’s important to me?

Hospice patients may travel — unlike some other Medicare benefits, there is no requirement that the patient be homebound.  A hospice agency, however, cannot itself continue providing care if a patient moves out of its service area.

If you plan a short trip, your hospice can contract with another hospice agency to provide care at the site of your visit.  You should begin making these arrangements with your hospice well in advance of your trip.

If you plan an extended stay, or plan to live at the other location, you should let your hospice know beforehand to arrange a transfer.  This will allow a hospice agency at your new location to continue your care without interruption.

If I decide I need to go to the hospital, what do I do?

If you think you need to go to the hospital, you should speak to your hospice caregivers at once.

When you elect hospice care, you authorize the hospice to make some caregiving decisions for you.  Hospice care plans are generally designed to maximize the quality of life for patients and families, and allow patients to remain at home.  Going to the hospital for anything related to your terminal illness would generally be seen by the hospice as non-compliant with its plan of care.  Such action may result in a patient being discharged from hospice care.  Also, the hospice will not cover the costs of hospital services or transportation to the hospital if the move was not included in the patient’s hospice plan of care.

If you are now receiving treatment at a hospital (or from a physician) for conditions not related to your terminal illness, you should tell your hospice agency about this at the earliest opportunity, preferably before election of hospice care.  This will not necessarily disqualify you from electing hospice care.  The hospice will, however, determine whether the treatment for the “other” condition is consistent with the requirement that hospice patients forego curative treatment.  It is possible, for example, to be covered under Medicare Part A both for hospice care as well as for certain treatments not related to the terminal illness but which increase patient’s comfort and quality of life.

Can I keep my own physician with Hospice?

Hospice patients may be cared for by the doctor of their choice. The patient can continue to see their personal physician, or choose to see our Medical Director instead, or have both doctors work together. The choice belongs to the patient and their personal physician. No matter the choice, Hospice Care of Middletown’s Medical Director is always available to provide advice to the hospice care team.

Is Hospice only for people with cancer?

Hospice care does not automatically end after six months. Medicare, Medicaid, and most other insurers will continue to pay for hospice care as long as a physician certifies that the patient continues to have a limited life expectancy.

What if my condition improves?

Occasionally, the quality of care provided by hospice leads to substantially improved health, and life expectancy exceeds six months. When this happens, the hospice provider will transfer care to a non-hospice care provider. Later, when patients become eligible for hospice, they can re-elect the hospice benefit.

What if we decided we don’t want Hospice anymore?

The patient and family can discontinue hospice care at any time. Hospice will ask you to sign a revocation form if you no longer want hospice services.

How does Hospice manage pain and other symptoms?

Hospice physicians and nurses are experts at pain and symptom control. They are continually developing new protocols for keeping patients comfortable and as alert and independent as possible. They know which medications to use simply and in combination to provide the best results for each patient. 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.

Doesn’t pain control medications make people feel “doped up”?

When morphine and other pain control medications are administered properly for medical reasons, patients find much-needed relief without getting “high” or craving drugs. The result is that hospice patients remain more alert and active because they are not exhausted by uncontrolled symptoms.

Will Hospice take away my medicines?

As the hospice team works with the patient and their physician to control the pain and symptoms related to the terminal illness, it might be necessary to stop or change medicines the patient has regularly taken, even over-the-counter products. This is done only to insure the patient gets the highest level of pain and symptom control, a

How often will a nurse visit and how long does the visit last?

Visit lengths vary according to the patient and family needs. Most patients are initially seen by a nurse two to three times per week, but visits may become more or less frequent based on the needs of the patient and family. Visits are approximately 60 minutes long.

What other services may be involved?

Other disciplines who may visit include a medical social worker, chaplain, Hospice medical director, physical therapist, occupational therapist, speech therapist, home health aide, massage therapist, bereavement specialist and volunteer.

What if we don’t want all of the disciplines to visit?

The patient and family are free to decide which services are needed. A nurse and medical social worker are the essential services required.

May the patient have physical therapy, occupational therapy or speech therapy?

Hospice will provide therapy to the extent that it would add to the patient’s safety and quality of life.

What kinds of things would a volunteer help with?

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.

Because Hospice volunteers spend time in patients’ and families’ homes, we have an application and interview process to assure the person is right for this type of volunteer work.  In addition, hospice programs have an organized training program for their patient care volunteers.  Areas covered by these training programs often include understanding Hospice, confidentiality, working with families, listening skills, signs and symptoms of approaching death, loss and grief and bereavement support.

Does Hospice have people who stay with the patient overnight?

Hospice is a visiting service and does not provide in-home hourly care. If you are interested in hiring hourly care, our social worker can provide you with resources.

What happens if we have a problem after hours?

Our Hospice services are available 24-hours-a-day, seven-days-a-week. Our phones are answered by an answering service after hours and on weekends. The answering service pages an on-call nurse who returns your call promptly, usually within 15 minutes. The on-call nurse will come to the patient’s home if necessary.

Can we call 911?

We ask that you call Hospice Care of Middletown first for all of your urgent needs. We will facilitate any care you might need.

What kind of emotional and spiritual support does Hospice provide?

Hospice recognizes that people are more than a collection of symptoms. People nearing the end of their lives often face an 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.

Do state and federal reviewers inspect and evaluate hospices?

Yes.  There are state licensure requirements that must be met by hospice programs 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.