Hospice Care and ALS

What is hospice?
Hospice is a comprehensive program of supportive care for persons living with a terminal disease, such as ALS. Hospice care seeks to minimize the symptoms caused by ALS and to provide an environment of physical, emotional and spiritual support, permitting a person to live their life to their fullest potential.

When is the right time to consider hospice?
The patient, the patient’s family and their doctor or nurse should all discuss the decision to enroll in hospice. Hospice is usually selected when death is likely within six months. Patients who have Medicare as their primary insurance and who are enrolled in hospice are re-certified every 90 day during this six month period. When a person lives beyond this six month period, they are re-certified every 2 months thereafter. Recertification is determined by further changes in the disease that result in an increased risk of dying.

Goals of hospice
The patient’s goals should be consistent with the goals of hospice care: a focus on the quality of life and comfort of the patient. If the patient is seeking medical treatments with the goal of prolonging their life, hospice may not be an appropriate choice. An example of such a treatment might include having a tracheostomy and relying on a ventilator in order to breathe. However, a patient who is already using a ventilator, but wishes to stop, or who wishes to continue with ventilation, but wants no further life-sustaining measures, may be eligible.

How does hospice work?
All hospices have a team of caregivers who are involved in the patient’s care. A medical director leads this team. Regular hospice team meetings are conducted to review and develop patient treatment plans and to coordinate the patients care. Ideally, this care is coordinated with the patient’s ALS providers.

Nurses are key members of the hospice team, helping patients and their families make critical decision about their care. The nurse frequently acts as a liaison between the patient and both the hospice and ALS clinic teams. A hospice nurse is available 24 hours a day, 7 days a week to deal with any new issues, no matter when they occur. Hospice nurses may make a visit even in the middle of the night if a significant problem develops and can't be resolved over the phone. These nurses are skilled at problem solving and often work with patients who have multiple serious health issues.
 
Hospice is also committed to caring for the patient’s family. The hospice social worker helps patients and families deal with emotional issues associated with disease progression and loss. A pastoral counselor may help patients and families cope with spiritual concerns a person may have as they confront their mortality. Of course, the patient is always in control of who they wish to be involved in their care and how often they visit.

Patients are often concerned with the burden that their care places on their family. The hospice home health aide plays a central role in minimizing this burden by relieving family members of some of the physical tasks of caring for the patient. In addition, every hospice has a trained group of volunteers who are available to help the patient or family with non-medical tasks. This might include visits as friendly, understanding company.

Where is hospice?
Hospice care generally takes place in the patient’s home. Hospice staff support and teach family members and friends how to provide patient care. Sometimes, arrangements are made with a hospice house, nursing facility or hospital to provide a respite period for the family. Hospices may have contracts with different facilities to provide this service.

When the disease is more advanced, and as patient care becomes more intense, a patient may decide to go to a hospice house. A hospice house is a facility that is designed to be as close as possible to the home experience, but with on-site professional nursing and medical staff. The furnishings, rooms and the structure of the house allow for personal independence and patient/family comfort. Hospices that do not have their own house may be able to make arrangements for admission of a patient to a hospice that does.

Can a person in hospice see their ALS team or be admitted to the hospital?
Yes, a hospice patient can continue to see their ALS doctor and team. 

Many people who enter hospice have the goal of avoiding future hospitalizations. Nevertheless, a person can go to the hospital if there is a significant problem and they wish to do so. Typically, when this occurs, hospice will temporarily discharge the patient from hospice coverage and the patient’s insurance will revert back to their previous hospital insurance. Upon discharge, the patient may resume hospice care.

Does insurance pay for Hospice?
Medicare and Medicaid (Mass Health in Massachusetts), as well as most major insurance carriers provide a hospice benefit. Hospice is reimbursed by insurance on a per diem basis with one daily fee paying for all the services, medication and equipment that is provided. Typically, BiPAP and a cough assist device, commonly used in the care of an ALS patient, are covered by hospice as are many common pieces of equipment like a hospital bed.

However, when a person with ALS enrolls in hospice, some equipment may not be covered. This generally includes a power wheelchair and most computerized communication equipment. The expense of these items is prohibitive for most hospices and they should be obtained through other funding sources prior to entering hospice. The high cost of paying for Riluzole, a medication that slows the progression of the disease, may also present concerns for some hospices. Coupled with this cost, the benefits of using Riluzole in the late phase of ALS is questionable. 

Patients who receive their care in a hospice house may have this covered by insurance. However, to have this fully paid, certain eligibility conditions may have to be met.

Are there other options besides hospice ?
Other programs exist in some Visiting Nurse Associations that help “bridge” the patient to hospice. These programs best serve patients who need additional care, but do not yet qualify for hospice. They are also available for patients who may qualify for hospice, but do not want to enroll in hospice yet. Other palliative care programs, offered by some Visiting Nurse Associations, may also help patients make this transition, offering expert nursing care and ensuring the patient’s physical and emotional comfort.

What is a “DNR”?
The term DNR means “do not resuscitate.” A DNR indicates that in the event a patient’s heart stops beating, no attempt will be made by emergency personnel or hospice staff to re-start it using cardiopulmonary resuscitation (CPR) 

In Massachusetts, emergency services are required to provide CPR if they come upon scene of a cardiopulmonary arrest. Family may, in an urgent situation and faced with not knowing what to do, decide to call 911. In Massachusetts, a DNR form, signed by your doctor, or nurse practitioner and presented to emergency medical personnel on the scene, relieve them of this obligation to perform CPR.

Given the terminal nature of ALS and the goals of quality of life and comfort, DNR orders are often discussed upon admission.

Can I change my mind after I enrolled in hospice?
The patient can always, for whatever reason and at any time during their hospice admission, change their mind and revoke the DNR and seek all life sustaining measures. In doing so, the patient would revert to their former care and coverage.

How do I get referred to hospice?
A hospice referral is something that should be discussed with your doctor and nurse. Before entering hospice, it is important to fully understand all the available options of care for the patient’s current stage of ALS.

In choosing hospice, important issues to consider might include the hospice’s experience caring for patients with ALS and their previous experience in communicating with your ALS team. In addition to helping a person understand the appropriate time to enroll in hospice, your doctor or nurse may be able to make recommendations of hospices in your area familiar with caring for ALS patients. Arrangements can be made for a representative from a hospice program to come to your house to discuss their program.