What are some questions I 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 to neither hasten nor postpone it. Below is a list of questions you should consider when looking for a hospice program.
- Is the hospice licensed?
- What types of 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 provided in a nursing home or long-term care facility?
Who qualifies for hospice care?
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.
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. The team works collaboratively, focusing on the dying patient's needs, whether 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 practical 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 such as bandages and catheters
- drugs for symptom control and pain relief
- volunteer support to assist patients and loved ones
- physical therapy, speech therapy, occupational therapy, and dietary counseling
How does hospice care work?
Typically, a family member serves as the primary caregiver and, when appropriate, helps make decisions for the terminally ill individual. Members of the hospice staff make regular visits to assess the patient and provide additional care or other services. Hospice staff is on-call 24 hours a day, seven days a week
The hospice team develops a care plan that meets each patient's individual needs for pain management and symptom control. The team usually consists of the following individuals:
- the patient's personal physician
- hospice physician (or medical director)
- home health aides
- social workers
- clergy or other counselors
- trained volunteers
- speech, physical, and occupational therapists (if needed)
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 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.
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. Hospice can also provide trained volunteers to provide respite care to give family members a break.
What role do volunteers play in hospice care?
Because round-the-clock, hands-on care is the hallmark of the hospice experience, hospice provides trained volunteers to aid the family and patients. Most hospice volunteers are trained to relieve the primary caregivers, do household chores, and help bathe the patient. Perhaps their most important task is their ability to be "good listeners."
Is care for the patient at home the only place care can be delivered?
No. The majority of hospice patients are cared for in their own homes or the homes of loved ones. "Home" may also be broadly construed to include services provided in nursing homes, personal care homes and prisons.
How does hospice manage pain?
Hospice believes that emotional and spiritual pain is just as real and in need of attention as physical pain, as it addresses each. 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, massage and diet counseling.
Is hospice care covered by insurance?
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 cover hospice services.
If the patient is eligible for Medicare, will there be any additional expense to be paid?
Medicare covers all services and supplies for the hospice patient. In some hospices, the patient may be required to pay a 5% or $5.00 co-payment on medication and respite care. You should find out about any co-payment when finding a hospice.
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. Most hospices also sponsor bereavement groups and support for anyone in the community who experienced the death of a family member, a school friend, and the like.
Where can I find additional information about a hospice?
To determine the hospice's compliance history with state and federal regulations, you may review the agency's survey history and choosing the county in which the hospice is located.
What should I do first if I am having a problem with the care provided by the hospice?
As soon as you think you have a problem, you should immediately talk to the staff to see if they can help. If you are not satisfied with any response you may receive, make sure you talk to the administrator. It is the administrator's responsibility to assure that concerns are dealt with efficiently and effectively. The administrator should always report back to you about their efforts to deal with your concerns.
What should I do if I feel the hospice hasn't addressed my concerns adequately?
You can make a complaint about a hospice agency to the Department of Health. Complaints can be made by letter, telephone or fax. We also have a toll-free hotline that you can call 24 hours a day, seven days a week. The hotline number is: 1-800-254-5164.
Who will investigate my complaint and what are their qualifications?
A Department of Health division surveyor from the Division of Home Health will investigate your complaint. These surveyors are registered nurses who have been trained and are knowledgeable about federal and state regulations for hospice agencies.
Will my complaint be kept confidential?
The person taking the complaint information from you will ask if you wish to remain confidential. Whenever possible, when we investigate a complaint we will select a group of patients (including the one you are concerned about) who share similar characteristics. In this way, the hospice agency will not know which patient is the target of the investigation. We cannot guarantee that the home health agency will not figure out who the patient is, but we will not inform them nor confirm their suspicions.
What happens after a complaint is made?
If the complaint is called to the hotline, the complaint is logged and reviewed by the Division of Home Health associate director, who will determine whether the complaint poses potential life- threatening situations to patients. The complaint is then forwarded by computer or fax to the surveyor to investigate. If the complaint does not present a life-threatening situation, the investigation will be initiated within two days and an on-site investigation will occur within 56 days.
Will I know the results of the investigation?
Yes. That is why it is important that you provide us with your name, address and phone number (including area code). You will receive confirmation that the complaint was received, and you will also receive notification afterward telling you the results of the investigation.
What are the possible outcomes of an investigation and what do they mean?
If the surveyor was able to find sufficient evidence, the complaint will be considered substantiated. If a complaint is substantiated, there are two further determinations that are made regarding the problems at the hospice. The first determination that can be made is "substantiated with deficiencies cited." In this event the department will issue a statement of deficiencies or a list of problems to the facility. The hospice must then submit a written plan of correction to the department. The plan tells us how the hospice intends to prevent a recurrence of the problem in the future. A second determination that can be made is "substantiated with no deficiencies cited." This means that the allegation was true, but they did not violate any of the State or Federal regulations. We are only permitted to issue deficiencies according to the state and federal regulations that we monitor and enforce.
It is not always possible to substantiate allegations due to the passage of time, lack of documentation, or lack of observation to support a finding of substantiation. This does not mean that the complaint was not true; it simply means we could not find enough evidence to substantiate it at the time of the investigation. Please be assured that we will continue to review all complaint issues when we visit the hospice agency in the future.
What happens if deficiencies are found at a hospice?
For every deficiency identified, the surveyor must decide how serious the problem is for the patients. The surveyor will write a description of the problem(s) called a "statement of deficiencies" and submit it to the hospice agency. The hospice agency must submit, in writing, their proposed solutions to the problem(s). This is called a "plan of correction (poc)." You may ask to see a copy of this report from any hospice agency.