Electing & Revoking Hospice Care: Frequently Asked Questions (FAQ)
I’ve counseled thousands of families over my career. Hospice is one of those tough topics to talk about. When I discuss hospice with clients and members of the public when speaking that “hospice planning is my most effective asset protection planning”. How can that be, you may ask? We’ll read the questions with answers I’ve written for you to better understand my reasons.
Hospice is a kind of care, specifically comfort care for the terminally ill. Most hospice care is provided in the home of a patient or a family member, or in a long-term care facility (nursing home). In New Jersey, hospice care is also available in a small number of hospice residences and hospice units in hospitals. New Jersey law allows hospice care to be delivered without regard to a patient’s residence.
FYI, the concept of hospice as a “place to die” grew from the Middle Ages, when a “hospice” was a waystation for travelers to rest, and where people with end-stage illness were brought to die. In England and much of Europe since the 1960’s, hospice care has usually been delivered in free-standing hospice houses or hospice units in hospitals. In the U. S., however, hospice seeks to satisfy most patients’ desire to spend their final days and months in their own home, whenever possible.
Do we have to discuss dying? I know it’s a tough subject.
One of the purposes of hospice care is to prepare the patient and family for the patient’s death. But another purpose of hospice care is to comfort the patient. Hospice staff is skilled at balancing those goals. Hospice staffers – especially the social worker and spiritual counselor — will gently evaluate the patient’s readiness to cope with the prognosis and adjust their work accordingly.
It is important for the family to understand that the patient may be far more willing than the family to discuss issues of death and dying, and the hospice staff will respond primarily to the patient’s wishes and needs in this regard. Hospice staffers will not lie to their patients or families, nor will hospice engage in deceit or withholding of information to those who have a right to know.
If I elect hospice, will I die soon?
To be admitted to hospice care, the patient must be certified by two physicians as having a terminal illness and a life expectancy of six months or less. In electing hospice care, the patient is merely acknowledging that he or she is seeking comfort rather than cure.
Further, hospice does not “cut off” at the end of the six-month prognosis. Some patients live well beyond their original six-month prognosis, and hospice care may continue if the physician continues to certify a six-month life expectancy, the patient wishes to continue and the hospice believes the patient requires the services.
What hospice can guarantee is that by electing hospice earlier rather than at the last minute, you will be providing yourself and your family with access to a wide range of helpful services.
Can I still see my doctor for my terminal prognosis?
Yes, you may keep your doctor. Hospice will work with your physician regarding your terminal illness. Your doctor can bill Medicare for his oversight of your case while you are receiving hospice care.
Sadly, though, some doctors do not wish to continue to follow their patients after they elect hospice care. They may want to focus on patients for whom cure is still an option. They might feel there is “nothing more” he or she can do. They might feel a sense of “failure” if a patient becomes terminal. Many more doctors, however, want to help their patients during this difficult time and understand the extra comfort that patients get from continuing with their own familiar physician despite the change from curative to comfort care.
Can I choose to stop receiving hospice care? What if I change my mind about hospice?
Yes, you may choose to stop receiving hospice care, at any time and for any reason. This is called “revoking” the election of hospice care. Simply notify the hospice so it can start the revocation process, which will require your signature. The hospice will probably want to discuss your request and see if it can resolve any issues of concern.
The hospice also has the right to discharge a patient. Some reasons might be that:
- the patient’s condition has stabilized and does not require hospice services at present
- the home environment is not safe for the hospice staff and/or volunteers
- the patient has moved out of the hospice’s service area, or
- the patient refuses to comply with the hospice’s plan of care.
In either case – revocation or discharge – any qualified patient may elect hospice care in the future.
How do I pick the best hospice?
There is no organization authorized by the federal or state governments to “rank” or “rate” hospice agencies.
All New Jersey hospices are licensed by the State of New Jersey and certified for hospice by Medicare. An agency cannot legally claim to offer hospice services unless it has achieved State hospice licensure and Medicare hospice certification.
Be sure that an agency is licensed for hospice by the State and certified for hospice by Medicare before agreeing to receive services – this is the best way to guarantee the quality of care. Licensure and certification as a hospital, nursing home, or home health agency does not by itself authorize the organization to provide hospice care. If you’re not sure whether an agency is licensed for hospice by the State, call the New Jersey Hospice and Palliative Care Organization at 908-233-0060.
If you have a special concern (like services in a language other than English), call several hospice agencies serving your area and ask them about it.
If I don’t like my hospice agency, can I choose another?
Yes, you can choose another hospice.
If you have concerns, complaints or questions, you should first address them with your current hospice. Hospice care is determined by a plan of care, which is developed by each hospice team to meet the needs of each patient. Hospices have a lot of flexibility available in creating these plans of care and will work to incorporate the wishes of patients and families, as long as they are not inconsistent with the philosophy of hospice or do not place excessive burden on the hospice’s resources, which must be allocated in ways that fairly meet the needs of each patient.
Should you be unable to resolve the issues of concern, you have the right to transfer to another hospice. Contact the agency to which you would like to transfer, as well as the agency from which you are now receiving care and inform them both of your wish to transfer. The agencies should work together to implement the transfer.
What if I live longer than six months?
You can receive hospice care for longer than six months.
The “six months” refers to the physicians’ prognosis (best estimate) of life expectancy at the time a patient is admitted to hospice care. Every few months, a doctor must certify that a patient’s life expectancy is still six months or less from that point. Prognosis can’t always be predicted. Some patients have lived well beyond their initial six months’ prognosis and continue hospice care, because at every re-certification, the physician is still willing to say the patient’s life expectancy is six months or less.
I’m still walking – I can’t be ready for hospice!
Sure, you can. There is no requirement in hospice that a patient be home-bound or bedridden. In fact, some hospice patients visit their loved ones in far-off cities. Others are on their feet the very day they die. There are only two requirements for admission to hospice care: (1) a patient must wish to forego further curative treatment and instead seek comfort; and (2) two physicians must certify that the patient suffers from a terminal illness and has a life expectancy of six months or less.
I don’t think I’m close enough to death. Am I ready for hospice? Do I have to be ready to die to elect hospice?
To be admitted to hospice care, two conditions must be met: (1) a patient must wish to forego further curative treatment and instead seek comfort; and (2) two physicians must certify that the patient suffers from a terminal illness and has a life expectancy of six months or less. If both of those conditions exist, then the patient is “ready” for hospice. Ideally, a patient and family spend months under the care of hospice, not weeks or days, because then hospice can provide the whole range of services and the family has more time to adjust to the situation.
Being ready for hospice does not mean you are ready to die. It is wrong to think that someone must be “at death’s door” before being admitted to hospice. In fact, many patients and families tell us “we wish we knew about hospice sooner.” Patients and families can get the most benefit from hospice when the patient is admitted earlier rather than later. Waiting until the “last minute” can deprive the patient of months of expert management of pain and symptoms, deprive the family of months of housekeeping and volunteer support; and deprive both patient and family of months of helpful emotional and spiritual counseling.
When should I contact hospice?
When you or a loved one is seriously ill, find out about hospice. You may not need hospice’s services for a while, or even a long time, but it is good to know how patients qualify for hospice, what services are available and how hospice care can benefit you and your loved ones.
If your disease is so advanced that curative treatments are being stopped – or if your treatments make you suffer and don’t seem to be working – it is time to contact hospice directly.
Hospice will contact your doctor or the hospital discharge planner to plan for enrollment in hospice. Sometimes the doctor or the hospital discharge planner will contact hospice directly after they have discussed the matter with you. The patient (or the patient’s legal representative) makes the final decision whether to enroll in hospice.
When you elect hospice, you are signing a document saying only that you are seeking comfort rather than cure. It doesn’t mean that you accept the doctor’s idea about how long you might live.
Can anyone receive hospice services?
Hospice services are available to all persons regardless of age, gender, race, religion, ancestry, citizenship, veteran status, marital status, sexual preference or mental or physical handicap. The only requirement for admission is that two physicians must certify your life expectancy of six months or less.
Payment for hospice services is available through Medicare Part A, New Jersey Medicaid, many private insurers and managed care policies, and private pay. If none of those options are available, contact the hospice when you are ready to elect and explain your financial situation to the hospice staff member.
Is hospice good for any kind of illness? I thought hospice was just for cancer patients.
Hospice can be provided for any person whose terminal illness gives them a life expectancy of six months or less. Two physicians must certify that this condition exists. “Failure to thrive” is also an acceptable reason for admission to hospice care, as long as the six months’ prognosis is met.
Terminal diseases represented among hospice patients include all kinds of cancer, liver disease, heart disease, lung disease, renal (kidney) disease, Alzheimer’s disease, ALS, other neurological diseases, AIDS and COPD (chronic obstructive pulmonary disorder).
How do I qualify for hospice care?
A patient will qualify for hospice care if two doctors sign a document that a patient is terminally ill and is expected to live less than six months. One of these doctors is the patient’s own physician; the other is the hospice medical director. This is the sole medical requirement for admission to hospice.
The patient must sign an election of hospice care, in which the patient says he or she is no longer seeking curative treatment and instead seeks care for comfort.
Payment for hospice care can be made in many ways. The patient and family should discuss this with the hospice before electing hospice care. About two-thirds of New Jersey hospice patients receive hospice care through Medicare Part A.
Who will know I am receiving hospice care?
The hospice will tell no one outside of your immediate family (meaning, people living with you or other people that you have designated to care for you). You are free to tell anyone else you wish as much or as little as you want.
Can a nurse come every day?
Frequency of visits is based on the patient’s condition and is determined by the hospice agency hired to care for the person. In cases of severe pain or symptom management issues, daily visits may be necessary, but they are unlikely to be needed for most patients.
How many hours a day can I get from aides? Why did my friend in another state get more hours from the home health aide than I am?
Aides provide support in housekeeping related to the patient’s illness. Aide services are available to hospice families based on need, as determined by the hospice. Every case is considered for aide services, but there is no “requirement” that a hospice agency provides aide services on every case, nor that any particular number of hours be provided.
Why can’t the aide be here when I want her here?
Aides typically see several families each day and may not have much flexibility in their schedules. Also, aides sometimes do not own cars and must travel by public transportation, and therefore must organize their days based on bus schedules. If you have scheduling requests, call the hospice office and speak to the person who organizes the aides’ workloads.
Do family members need to be in the house 24/7?
No. It is quite common for hospice staff or trained volunteers to give family members a break of an hour or so if they wish. If your family has been caring for your loved one for weeks, and needs a break of several days, discuss the benefits of respite care with the hospice staff. Respite care will allow the patient to be transported to a health care facility for several days while the family takes a breather.
Do I have to use a hospital bed rather than my own bed?
No. Hospice seeks to improve the patient’s comfort. If you feel more comfortable in your own bed than in a hospital bed, you should say so to your hospice caregivers. If there are reasons why a hospital bed would be helpful in your case, the hospice staff will let you know.
What happens if I suddenly get a lot of pain?
You and your family caregivers should follow the instructions given to you earlier by the hospice nurse. You are encouraged to call the hospice office for instructions and advice.
What is a “pain kit”?
A “pain kit” is a package of medications, prescribed by a pharmacist and secured by the hospice, which is available to treat a hospice patient’s pain. The “pain kit” remains in the patient’s home.
Why won’t hospice pay for all my medications?
Medicare regulations state that the patient will co-pay $5 or 5% of the prescription cost, whichever is less. It is not a decision for hospice to make.
Hospice can only pay for medications related to the terminal illness. If a patient with a chronic heart condition is admitted to hospice for terminal cancer, hospice will be able to pay for the cancer drugs, not for the heart drugs.
Can you help me die – the “little black pill” or something like that?
Hospice provides comfort to the patient, allowing death to occur naturally. Hospice does not hasten or delay death.
They’ll give the patient extra morphine to “push him over the edge” near the end, right?
Hospice seeks to reduce the patient’s physical pain, often using morphine. A patient on morphine often develops a natural tolerance to the morphine over time, requiring the hospice to use larger doses of morphine to keep pain to a tolerable level. Larger doses of morphine may depress respiration (breathing) as a side effect, sometimes to the point where a patient stops breathing. This is called the “double effect,” which is accepted medical practice, widely accepted by religious groups, and in keeping with hospice philosophy, which seeks to ease a patient’s suffering while neither hastening nor delaying death through artificial means.
What if I want to travel to another city or state — to a family event or vacation, to visit someone, or to see someplace that’s important to me?
Hospice patients may travel — unlike some other Medicare benefits, there is no requirement that the patient be home-bound. 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. This is possible under rules approved by Congress in late 2003. 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? What happens if I need to take an ambulance to the hospital?
If you think you need to go to the hospital, you should speak to your hospice caregivers at once.
When you elected hospice care, you authorized 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 still see my doctors for my other diseases?
Yes. Let your hospice team know you plan to do so.
What if I live alone?
Federal regulations about hospice require that hospice caregiving be provided in an environment that is safe for the patient and hospice staff. Many hospices will go to great lengths to secure a safe environment for a patient. If a safe environment cannot be found, however, the hospice may be unable to provide services and may decline to admit the patient or may discharge the patient to some other kind of health care provider.
If you live alone, you should make a special effort to contact several hospices within your area at the start. Explain your situation and compare their responses.
Will somebody hold my hand when I die?
Hospice provides comfort to the dying patient and family. If it is important to you to have someone hold your hand in your final moments of life, or just be by your bedside, you should say that to your family caregivers and to the hospice staff.
What is respite care?
Respite care is a period of several days for which the hospice patient is moved to a caregiving facility and receives hospice care there. This facility is typically a nursing home or a hospital. Respite care is designed to give a tired or stressed family a break from caregiving. If your family is at such a point, discuss respite care with your hospice staff.
Will the nurse really come in the middle of the night?
Hospice agencies have “on call” nurses for nights and weekends. Much of the work of an on-call nurse is educational in nature and is done by telephone. In cases of extreme pain or symptom issues, however, the nurse can make a house call at any time if, in her or his judgment, it is necessary.
Will Hospice help me with funeral arrangements?
Hospice staff, especially the social worker, will be glad to guide the family in making decisions about the funeral. Families are encouraged to do this well before the patient dies. Let the hospice staff know you’d like to talk about it.
Are hospice agencies licensed by the State?
Yes. Hospices may be licensed by the State of New Jersey after they have achieved certification for hospice by Medicare. To determine whether the agency providing your “hospice services” is licensed, you should contact the New Jersey Department of Health and Senior Services in Trenton. All hospices listed on the website you are visiting now are licensed by the State of New Jersey.
If you would like to speak to a NJ hospice attorney, contact Fredrick P. Niemann, Esq. toll-free at (855) 376-5291 or email him at firstname.lastname@example.org to schedule a consultation about your particular needs. He welcomes your calls and inquiries and you’ll find him very approachable and easy to talk to.
Written by Fredrick P. Niemann, Esq. of Hanlon Niemann & Wright, a New Jersey Hospice Care Attorney