When should a decision about entering a hospice program be made-and who should make it?
At any time during a life-threatening illness, it’s appropriate to discuss all of the 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” their disease. Hospice staff members are highly sensitive to these concerns and are always available to discuss them with the patient, family and physician.
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 healthcare professionals, clergy or friends.
What if our physician doesn’t know about hospice?
Most physician know about hospice. If your physician wants more information, it is available from the American Academy of Hospice and Palliative Medicine, medical societies, state hospice organizations, local hospices, or the National Hospices and Palliative Care Organization Helpline, 1-800-658-8898. In
addition, Physicians and all others can obtain information on hospice from the American Cancer Society, the American Association of Retired Persons, and the Social Security Administration.
Can a hospice patient who shows signs of recovery be returned to regular medical treatment?
Certainly. If improvement in the condition occurs and the disease seems to be in remission, the patient can be discharged from hospice and return to aggressive therapy or go on about his or her daily life.
If a discharged patient should later need to return to hospice care, Medicare and most private insurance will allow additional coverage for this purpose.
What does the hospice admission process involve?
One of the first things hospice 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. (Hospice may 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 so-called “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 life-limiting illness.
Is there any special equipment or changes I have to make in my home before hospice care begins?
Your hospice provider will assess your needs, recommend any necessary equipment, and help make arrangements to obtain it. Often the need for equipment is minimal at first and increases as the disease progresses.
In general, hospice will assist in any way it can to make home care as convenient and safe as possible.
How many family members or friends does it take to care for a patient at home?
There’s no set number. One of the first things a hospice team will do is prepare an individualized care plan that will, among other things, address the amount of care giving patient needs. Hospice staff visit regularly and are always accessible to answer questions and provide support.
Must someone be with the patient at all times?
In the early weeks 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 encourages someone be there continuously.
While family and friends must be relied on to give most of the care, hospices do provide volunteers to assist with errands and to provide a break and time away for major caregivers.
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 as appropriate.
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, spiritual caregivers, therapists, and volunteers – and each provides assistance base on his or her area of expertise. In addition, hospices help provide medications, supplies, equipment, hospital services, and additional helpers in the home, as appropriate.
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.
Is the home the only place hospice care can be delivered?
No. Although most hospice services are delivered in a personal residence, some patients are cared for in nursing homes or hospice centers.
How does hospice “manage pain”?
Hospice nurses and doctors are up-to-date on the latest medications and devices for pain and symptom relief. In addition, physical and occupational therapists assist patients to be as mobile and self-sufficient as possible, and they are often joined by specialists schooled in music therapy, art therapy, diet counseling, and other therapies.
Hospice believes that emotional and spiritual pain are just as real and in need of attention as physical pain, so it addresses these, as well. Counselors, including spiritual caregivers, are available to assist family members as well as patients.
What is hospice’s success rate in battling pain?
Very high. Using some combination of medications, counseling and therapies, most patients can attain a level of comfort that is acceptable to them.
Will medication prevent the patient from being able to talk or know what’s happening?
Usually not. It is the goal of hospice to help patients be as comfortable and alert as they desire. By constantly consulting with the patient, hospices have been very successful in reaching this goal.
Is hospice affiliated with any religious organization?
Hospice care is not an off-shoot of any religion. While some religious organizations 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 set of beliefs.
Is hospice care covered by insurance?
Hospice coverage is widely available. It is provided by Medicare nationwide, by Medicaid in some 47 states, and by most private health insurance policies. To be sure of coverage, families should, of course, check with their employer or health insurance provider.
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 they may not be aware of. Barring this, most hospices will provide care for those who cannot pay, using money raised from the community or from memorial or foundation gifts.
Does 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. Most hospices also provide supportive services for anyone in the community who has experienced the death of a family member, a friend, or a loved one.
If the patient is eligible for Medicare, will there be any additional expenses to be paid?
Medicare covers most services and supplies related to the life-limiting illness for the hospice patient. In some hospices, the patient may be required to pay a 5% or $5 “co-payment” on medication and a 5% co-payment for respite care. You should find out about any co-payment when choosing a hospice.
In medical terms, when is it time to consider hospice as an option?
It is time to consider hospice care when someone exhibits one or more of the following core and/or disease-specific indicators:

Core Indicators

  • Patient/family choose comfort care as opposed to curative care
  • Loss of function/physical decline
  • Increase in hospitalizations
  • Dependence in most activities of daily living
  • Multiple co-morbidities
  • Increase in ER visits
  • Weight loss

Disease-Specific Indicators

  • Amyotrophic Lateral Sclerosis
    • Unable to walk, needs assistance with ADLs
    • Barely intelligible speech
    • Difficulty swallowing
    • Weight loss
    • Significant dyspnea
    • Co-morbidities: pneumonia, URI
  • Cancer
    • Metastasis to multiple sites
    • Weight loss
    • Patient/family choose palliative care
  • CVA or Coma
    • Decreased level of consciousness, coma or persistent vegetative state
    • Dysphagia
    • Paralysis
    • Post-stroke dementia
    • Decreased nutritional status (despite artificial nutrition)
    • Co-morbidities
  • Dementia and/or General Decline
    • Unable to walk without assistance
    • Urinary and fecal incontinence
    • Speech limited to a few words
    • Unable to dress without assistance
    • Unable to sit up or hold head up
    • Complications: pneumonia, UTI, sepsis, pressure ulcers
    • Difficulty Swallowing/eating
    • Weight loss
  • Heart Disease – CHF
    • NYHA Class III or IV
    • Discomfort with physical activity
    • Symptomatic despite maximal medical management
    • Arrhythmias resistant to treatment
    • History of cardiac arrest
    • Cardiogenic embolic CVA
  • Liver Disease
    • Not a transplant candidate
    • Ascites despite maximum diuretics
    • Peritonitis
    • Hepatorenal syndrome
    • Encephalopathy with somnolence, coma
    • Recurrent variceal bleeding
  • Pulmonary Disease – COPD
    • Dyspnea at rest
    • Poor response to bronchodilators
    • Recurrent pulmonary infections
    • Cor pulmonale/right heart failure
    • Weight loss
    • Resting tachycardia
    • Hypercapnia/hypoxemia
  • Renal Disease
    • Plan for discontinuing dialysis
      • rapidly declining in spite of dialysis
      • no renal transplant
    • Displays signs of uremia (confusion, nausea, pruritus, restlessness, pericarditis)
    • Intractable fluid overload
    • Oliguria
    • Hyperkalemia