Adapted from NHPCO

The long-term survival of hospice in America depends on a public that is fully aware of the benefits of hospice and palliative care services. According to a survey conducted by the National Hospice Foundation, 75% of Americans do not know that hospice care can be provided in the home, and 90% did not realize that hospice care can be fully covered through Medicare. However, this survey also showed that Americans want the kind of end-of-life services offered by hospice.

To learn more about hospice, begin with the following questions and answers.

1. What are some questions that you should ask when looking for a hospice program?

Hospice care is a philosophy of care that accepts dying as a natural part of life. When death is inevitable, hospice seeks neither to hasten nor postpone it. Below is a list of questions you should consider when looking for a hospice program.

• What services are provided?
• What kind of support is available to the family/caregiver?
• What roles do the attending physician and hospice play?
• What does the hospice volunteer do?
• How does hospice work to keep the patient comfortable?
• How are services provided after hours?
• How and where does hospice provide short-term inpatient care?
• Can hospice be brought into a nursing home or long-term care facility?

2. How can you afford hospice care?

Eighty percent of people who use hospice care are over the age of 65, and are thus entitled to the services offered by the Medicare Hospice Benefit. This benefit covers virtually all aspects of hospice care with little out-of-pocket expense to the patient or family. As a result, the financial burdens usually associated with caring for a terminally ill patient are virtually nonexistent. In addition, most private health plans and Medicaid in 45 States, including Texas and the District of Columbia, cover hospice services.

3. Where does hospice care take place?

The majority of hospice patients are cared for in their own homes or the homes of a loved one. “Home” may also be broadly construed to include services provided in nursing homes, hospitals, assisted living centers and personal care homes – wherever the person resides.

 
4. How does hospice serve patients and families?

Hospice care is a family-centered approach that includes, at a minimum, a team of doctors, nurses, social workers, counselors, and trained volunteers.  They work collaboratively focusing on the dying patient’s needs, be they physical, psychological, or spiritual. The goal is to help keep the patient as pain-free and lucid as possible, with loved ones nearby until death.

Below is a list of services available to Medicare hospice recipients.

• Physician services for the medical direction of the patient’s care
• Regular home visits by registered nurses and licensed vocational nurses
• Home health aides and homemakers for services such as dressing and bathing
• Social work and counseling
• Medical equipment such as hospital beds
• Medical supplies related to the hospice diagnosis or for symptom control and pain relief
• Drugs for symptom control and pain relief
• Volunteer support to assist patients and loved ones
• Physical therapy, speech therapy, occupational therapy, and dietary
  counseling as appropriate for comfort care
• Again, Life’s Solutions is committed to providing the patient and family as much of a decision-making role as possible in selecting these services and respects the right of the individual to decline specific services

5. What role do volunteers play in hospice care?

Hospice provides trained volunteers to aid the family and patients.  All of our direct care hospice volunteers are trained to relieve the primary caregivers, do household chores, and help provide companionship, conversation, comfort, and caring. Perhaps the most important task, however, is their ability to be good listeners.

6. Who qualifies for hospice care and do I have to have cancer?

Hospice care is for any person who has a life-threatening or terminal illness.  Most reimbursement sources require a prognosis of six months or less if the illness runs its normal course.  Patients with both cancer and non-cancer illnesses are eligible to receive hospice care.  All hospices consider the patient and family together as the unit of care.

Many think of hospice as a service only for those with cancer. The reality is that the majority of our patients have non-cancer diagnoses including end stage renal disease, end stage chronic obstructive pulmonary disease, end stage cardiovascular disease, or end stage dementia.

7. When should a decision about entering a hospice program be made -- and who should make it?

At any time during a life limiting illness it is appropriate to discuss all of a patient’s care options, including hospice.  By law, the decision belongs to the patient.  Understandably, most people are uncomfortable with the idea of stopping an all-out effort to beat the disease.  Hospice staff members are highly sensitive to these concerns and always available to discuss them with the patient and family.
 

8. Should I wait for our physician to raise the possibility of hospice, or should I raise it first?

The patient and family should feel free to discuss hospice care at any time with their physician, other health care professionals, clergy, or friends.

In our experience, when asked what triggers a physician (not specifically trained in hospice care) to talk to a patient or family about hospice, their answer is unequivocally, “when the family brings it up.”

In our community education efforts, when asked how a family will know their loved one should think about hospice care, they answer, “when the doctor brings it up.”

All too often, no one brings it up until the last hours of life. There are benefits to enrolling in hospice even at this stage, but the full benefit of the support and education provided to the whole family system is lost.

While managing your healthcare is a partnership between you and your physicians, you do NOT need a physician referral to contact hospice for information. We have trained clinicians who will advise you of what services are available to you and will contact your physician, or can enroll you under the care of one of our physicians if you prefer.

9. What if our physician doesn't know about hospice?

Most physicians know something about hospice, but are not fully versed in it as a specialty.  If your physician wants more information about hospice, it is available from the Academy of Hospice Physicians, medical societies, state hospice organizations, the websites listed on our Resource page or the National Hospice Helpline, 1-800-658-8898.  We have trained staff who are willing to meet with physicians and/or their staff to provide more information or education right in their own office.

10. Can a hospice patient who shows signs of recovery be returned to regular treatment?

Certainly.  If a patient’s condition improves and the disease seems to be in remission, he or she can be discharged from hospice and return to aggressive therapy or go on about his or her daily life.   It is a great joy when a patient “graduates” from hospice care. It is proof again that we are mere mortals and healing can take place at any stage of the game. Some family members have said they believe their loved ones recovered to a point of not needing hospice due to the extra attention and care provided by the hospice staff.

If a discharged patient should later need to return to hospice care, Medicare and most private insurance will allow additional coverage for this purpose.

11. What does the hospice admission process involve?

The first step is education. We meet with the patient and family to outline their expectations and what factors led them to wanting more information about hospice care.

The next thing Life’s Solutions Hospice Care will do is contact the patient’s physician to make sure he or she agrees that hospice care is appropriate for this patient at this time. (Hospices have medical staff available to help patients who have no physician.)

The patient will also be asked to sign consent and insurance forms.  These are similar to the forms patients sign when they enter a hospital.

The hospice election form says that the patient understands that the care is palliative (that is, aimed at pain relief and symptom control) rather than curative. It also outlines the services available.  The form Medicare patients sign also tells how electing the Medicare hospice benefit affects other Medicare coverage for a terminal illness.

We send a trained professional to meet with the patient and family to explain all of these forms and assist with their completion. This process usually takes about one hour, and can be completed in whatever setting the patient and family choose. We are happy to travel to wherever is the most comfortable setting.

12. Is there any special equipment or changes I have to make in my home before hospice care begins?

The team at Life’s Solutions Hospice Care will assess your needs, recommend any equipment, and help make arrangements to obtain any necessary equipment.  Often the need for equipment is minimal at first and increases as the disease gets worse.  In general, hospice will assist in any way it can to make home care as convenient, clean and safe as possible.   We also communicate with the providers of any existing equipment in the home to coordinate care.

13. How many family members or friends does it take to care for a patient at home?

There is no set number.  In fact, it can be zero. Life’s Solutions cares for people every day who live alone without any other caregiver. One of the first things our hospice team will do is to prepare an individualized care plan that will, among other things, address the amount of caregiving needed in each person’s situation.  Hospice staff visits regularly and are always accessible to answer medical questions and provide support.

 
14. Must someone be with the patient at all times?

 
In the early weeks of care, it’s usually not necessary for someone to be with the patient all the time.  Later, however, since one of the most common fears of patients is the fear of dying alone, hospice generally recommends someone be there continuously.

15. How difficult is caring for a dying loved one at home?

It’s never easy and sometimes can be quite hard.  At the end of a long, progressive illness, nights especially can be very long, lonely and scary.  So hospices have staff available around the clock to consult with the family and make night visits if the need arises.

And the Medicare Hospice Benefit provides for up to 5 days of respite care every benefit period where the patient can be cared for short-term in a facility in order to provide the family caregiver a break or opportunity to attend to other needs. Life’s Solutions has contracts with nursing homes in both the north and south areas of Houston to provide this level of care.

 
16. What specific assistance does hospice provide home-based patients?

Hospice patients are cared for by a team of doctors, nurses, social workers, counselors, home health aides, therapists, and volunteers -- and each provides assistance based on his or her area of expertise.  In addition, hospices help provide medications, supplies, equipment, hospital services, and additional helpers in the home, if and when needed.

 
17. Does hospice do anything to make death come sooner?

Hospices do nothing either to speed up or to slow down the dying process.  Just as doctors and midwives lend support and expertise during the time of child birth, so hospice provides its presence and specialized knowledge during the dying process.
 
Hospice is about living well and connecting with loved ones; it is about comfort and peace and dignity.

 
18. Is caring for the patients at home the only place hospice care can be delivered?

No.  Although 90% of hospice patient time is spent in a personal residence (home, assisted living facility, personal care home, etc.),some patients live in nursing homes or briefly in inpatient hospice settings. Life’s Solutions has contracts with several area hospitals and medical centers as well as a local inpatient hospice unit for this level of care.

 
19. How does hospice manage pain?

Hospice believes that emotional and spiritual pain are just as real and in need of attention as physical pain, as it addresses each.  Hence the importance of the interdisciplinary team approach.

Hospice nurses and doctors are up to date on the latest medications, modalities, and devices for pain and symptom relief.  In addition, physical and occupational therapists assist patients to be as mobile and self-sufficient as possible.

 
20. What is hospice’s success rate in battling pain?

Very high.  Using some combination of medications, counseling and therapies, most patients can be kept pain free and comfortable.

 
21. Will medications prevent the patient from being able to talk or know what’s happening?

Usually not.  It is the goal of hospice to allow the patient to be pain free but alert.  By constantly consulting with the patient, hospices have been very successful in reaching this goal.

 
22. Is hospice affiliated with any religious organizations?

Hospice is not an off-shoot of any religion.  While some churches and religions have started hospices (sometimes in connection with their hospitals), these hospices serve a broad community and do not require patients to adhere to any particular site of beliefs.

Life’s Solutions Hospice Care offers ecumenical spiritual support based on the belief system of the patient. All beliefs, or lack thereof, are honored.

 
23. If the patient is eligible for Medicare, will there be any additional expenses to be paid?

Medicare covers all services and supplies related to the hospice diagnosis, the provision of comfort, and the management of pain for the hospice patient.  Medicare does not cover such things as room and board wherever the patient lives, curative therapies, vitamins, and over the counter medication, nor products not related to the terminal diagnosis.  Once our nurse assesses the patient, we can advise them and the family what items will and will not be covered under the Medicare Hospice Benefit.

 
24. If the patient is not covered by Medicare or any other health insurance, will hospice still provide care?

The first thing hospice will do is assist families in finding out whether the patient is eligible for any coverage of which they may not be aware.  Barring this coverage, Life’s Solutions will provide for anyone who cannot pay using money raised from the community or from memorial or foundation gifts.

 
25. Does the hospice provide any help to the family after the patient dies?

Hospice provides continuing contact and support for family and friends for at least a year following the death of a loved one.