The Continued Journey
Your selection of hospice care reflects a decision to live life with dignity, for as long as possible. You will make a choice to end treatments and to turn to a warm, supportive setting with your family and friends.
Hospice care is frequently misunderstood. It is not a way to speed up death nor is it a way to postpone it. The goal is to allow your condition to unfold as comfortably as possible, without aggressive treatments that can make you very sick and unable to communicate with loved ones.
Hospice is a system of patient care that relies on family members or other caregivers, supported by professionals who make regular visits and are available around the clock. It usually takes place in the home, although it can also be provided at a hospice unit within a hospital, in a free standing hospice, in an extended care facility or in a nursing home. If your symptoms become more difficult to control, you can still be admitted to the hospital for short stays.
When is it Time for Hospice?
You are typically eligible for hospice coverage when you have a short time left to live, as determined by your doctor. Unfortunately, most patients enroll in hospice care for one month or less. Hospice can be arranged quickly, but often, doctors wait until death is very near before they declare that nothing more can be done.
Talk to your doctor if you feel it is time to stop treatment and start hospice care. For example, you may decide to opt for hospice care if a new brain scan reveals that your brain tumor has become very aggressive or if a variety of new symptoms have cropped up all at once, such as hallucinations, speech problems, incontinence and excessive sleep.
Insurance Coverage for Hospice Care
Medicare and most private health insurance policies cover hospice, but you usually pay a portion of the cost.
The Medicare hospice benefit is used by less than one-quarter of Medicare beneficiaries. When you take advantage of this benefit you will not pay a deductible and your payment for drugs and other treatment products will not exceed $5 per prescription. Medicare will also pay for medical equipment.
If your usual caregiver needs a rest, Medicare will also pay for respite care in a Medicare-approved hospice inpatient facility or nursing home. You will pay 5% of the bill, and Medicare pays the rest.
Choosing a Hospice Program
Most communities have a variety of hospice providers from which to choose. Some hospices are for-profit organizations, others are nonprofits. Much like different health care providers or physicians, hospice organizations will also have slightly differing philosophies of care and it is important to evaluate which one might be best for you and your family. If your health care is covered by Medicare, you will want to ask if the service is Medicare-certified, which means it provides the core hospice services, such as on-call coverage around-the-clock. Your hospital discharge planner or the social worker can recommend a hospice service, but you can also ask friends for recommendations.
You may also ask your local chapter of the American Cancer Society, Agency on Aging, United Way or Visiting Nurse Association. The National Hospice and Palliative Care Organization can also assist you with finding a local provider.
An Overview of Hospice Services
Your care will be directed by a hospice team, consisting of doctors, nurses, home health aides, social workers, counselors and trained volunteers. Your primary care doctor will also be able to work with the hospice team.
Your hospice service will not provide 24-hour, in-home care. Instead, hospice team members will teach your family and caregivers the skills they need to care for you. The team will also provide intermittent nursing visits and will be available at any time, day or night, to answer questions over the phone or to make an emergency visit.
While hospice will not provide you with full-time aides, it may provide a nurses aide a couple of times per week to help you with bathing, dressing and other basic activities. The service also provides volunteers who may read to you, help you write letters, bring pets or provide respite for caregivers.
The hospice team provides bereavement care and counseling to your surviving family and friends.
Use of Pain Medications
For patients who have pain, the hospice nurse makes regular visits to monitor this and other symptoms. Pain management is achieved through powerful painkillers like morphine, Dilaudid and Fentanyl, which your caretaker and family members will be administering when the nurse is not present.
Some of these drugs may be injected or taken intravenously, but in many cases they can be placed under the tongue or delivered through a patch. When you first take these drugs, your breathing may slow or you may get very drowsy. If you experience any changes, your hospice doctor may need to alter your dosage.
Drugs used in hospice care are very powerful substances that can be abused by others. Make sure your caregiver safely locks them up away from children and visitors. The hospice nurse will carefully record how much medication was given and when it was given.