Chapter 5: Living life fully- hospice care

The heading of this chapter may at first seem strange. “Living life fully” is not a phrase that the average person calls to mind when thinking about hospice care. Typically, hospice is thought of as a place to die. In reality, this couldn’t be further from the truth. In fact, it is inaccurate on two fronts.

First, hospice is not a place. It is a philosophy and program of care. The majority of hospice care is provided in the person’s home. That home may be in a traditional house or apartment, or it may be in a residence such as an assisted living facility or nursing home. Hospice patients may also be treated in an in-patient setting when they have severe symptoms that need aggressive medical and nursing management, or if they caregivers need a respite, or break, for a few days. That in-patient setting may be freestanding, or part of a hospital or nursing home.

Second, the focus of hospice is not on helping someone die. It is about helping a person live to their fullest, even when they are in the end stage of an advanced illness. This means very aggressive approaches to controlling their symptoms so that they can enjoy the company of family and friends and have meaningful conversations and activities with them. There is lots of support of a variety of professionals, para-professionals, and volunteers. The team addresses the physical, emotional, and spiritual needs of both the patient and their caregivers. These interventions may include life review, facilitating conversations with family members, helping the patient engage in a long desired activity or unfinished business, etc. The goal of care is to reduce symptoms of pain or discomfort, while at the same time helping the patient to remain engaged and interactive to the greatest degree possible.

The support of the caregivers often makes the difference between a patient being able to remain in the comfort or familiarity of their home or not. I never ceased to be amazed at the demonstrations of love and care that I see family members and friends show to the hospice patient. The hospice team supplies these caregivers with the knowledge and support that makes this possible. And that support continues long after the patient dies, as hospice continues to meet with caregivers and family for bereavement support. A period of individual counseling is provided after the death of a patient to family and friends, and support groups and memorial services are provided by hospice throughout the year. For children who are dying, or for children of patients who are dying, hospice care-givers help them through play therapy and other age appropriate ways to process their thoughts and feelings.

The decision for hospice care is often a difficult one for families, caregivers, and even doctors. It is often less difficult for the patient themselves. Why is this? People are often afraid to suggest hospice as an option because they think that they are telling the patient that there is no longer any hope and that they are going to die. Physicians are often afraid to discuss the topic because they may feel that it represents a failure on their part, or that it means that they must end their relationship with the patient. From my experience, these fears are often more real to those caring for the patient then they are for the patient themselves. Most patients in the end stage of an advanced illness know the reality of their situation. In having the conversation about hospice, we are not calling their attention to their hopelessness or dying. We are acknowledging that we understand it too, and that we want to support them, be with them, and give them what they need to enjoy what time is left.

Even when a patient is beyond alertness or ability to comprehend these critical conversations about hospice, caregivers and family benefit from coming together with a mutual understanding of the situation and how they can best come together to meet not only the patient’s needs, but each other’s needs as well.

When is a patient appropriate for hospice care? The reimbursement criteria for hospice are that the patient have a serious, life threatening illness with a life expectancy of six months or less, and for which additional aggressive treatment is futile. It is important to understand that this does not mean that the patient must die within six months. It just means that it seems likely to be the case. If a hospice patient lives longer than the six months, they can be re-certified for another period, or a determination may be made that they have improved and are no longer hospice eligible.

There are four different levels of hospice care. The routine level covers services at home, including medical and nursing visits, physical therapy if needed, social work and pastoral care too. Medications related to the primary illness and symptom control are provided, as are medical equipment and supplies. A home health aide is provided to supplement the care given by family and friends. If caregivers need a break from their daily duties to re-charge themselves or to meet the needs of another family member, the second level, respite care is provided. The patient is moved to an in-patient setting for these days and receives care from the hospice team. When the caregivers are ready to resume their duties, the patient is returned home. Sometimes the care needs intensify during an acute episode, or in the very final stages of decline. During this time, the hospice team is able to provide aide and nursing care for extended hours in the home. This is called continuous care. Finally, there may be needs for symptom control and clinical management that exceed what can be reasonably provided in the home. In this case the patient is provided in-patient level of care by hospice professionals around the clock in a freestanding hospice unit, or in a hospital unit or scattered bed.

In each of these levels of care, the patient’s primary physician can remain the attending physician. He or she is supported by the medical staff of the hospice, who are trained and experienced in controlling pain, nausea, anxiety, and other symptoms that the patient may be experiencing. In some cases, the primary physician elects to turn the management of the patient completely over to the hospice medical team, but this is not required.

Hospice offers a wonderful program to provide comfort, support, and purposeful living in the final stages of illness. The biggest frustration of hospice workers is that often the referral to their program is made too late and they have such little time to accomplish so much with the patient. If hospice care is considered earlier so that patients are on the program for weeks or months, rather than days, both the patient and their loved ones have much to gain. In fact, for some illnesses research has shown that patients live longer on hospice care--and more comfortably-- than they do when receiving aggressive curative treatment that is futile. If you are not sure if hospice is right for you or a loved one, don’t hesitate to call a hospice provider and discuss your situation. They won’t push you to make a decision, and will give you the information you need to decide when the time may be right.