Of course it is a difficult and uncomfortable to discuss hospice, even when a family member desperately needs the help it provides but it is also essential to have the conversation anyway, for several reasons. Hospice offers essential services for both the patient and the entire family. Hospice also allows for the patient to remain where they feel most at ease – wherever they call home – instead of moving to an unfamiliar and less comfortable location. Perhaps most importantly, hospice allows the patient and family to make their own decisions about care. It provides dignity and a measure of control that both the patient and family might not have otherwise.
Ideally, a discussion about hospice would begin with the physician. When curative treatment becomes less successful, the goal of care might become comfort and symptom management. It is completely acceptable to ask the doctor if hospice is a reasonable choice. Even discussing the option helps the physician to understand your concerns. Even if hospice care is not yet appropriate, discussing it opens the door to a later conversation if the need exists in the future.
It is important to remember that choosing hospice is not “giving up”. Hospice is sometimes described as “aggressive comfort care”. This means the hospice staff will work very hard to keep the person as comfortable as possible so that the person may live his or her remaining life in the fullest possible way.
When hospice is an available option, you can discuss it with the patient. There are a number of things that might assist you in having this conversation. The first question to consider is who might best initiate this dialog with the patient. Is there a family member or friend that seems best? Would someone such as clergy or the physician be the most appropriate person? Sometimes persons outside the family can engage in such conversations more effectively since they are less emotionally involved. As you consider this question, think about whom the patient seems most comfortable discussing such matters. For example, who holds the health proxy for the patient? Has that person had a prior history of such conversations about care?
Choose the time carefully. Often patients understand that they are dying even if they do not always communicate that to those around them. Sometimes though, patients will be more willing to acknowledge that reality; other times less so. Find a quiet time when the patient is comfortable and there are no distractions to discuss the question of hospice. Respect the fact that the patient may not be ready to address the issue at that time. Allow the patient the freedom to address the issue in the future if they wish. “We can discuss this again if and when you wish” can keep the dialog open. And, it is often a dialog. Critical decisions may not be made right away.
Phrase the question conditionally. The issue is not whether or not the patient may want to enter a hospice program, but whether the person wants to consider the choice. Once hospice does an evaluation, the hospice staff can help assess whether hospice would be helpful and address any concerns that the patient or other family members may have. Even at that point, there may be a decision on whether or not to engage hospice care.
Like other end-of-life decisions, it is best to discuss these as early in the process as possible. It is far better to develop advance directives when an individual is well and healthy, review them with family and the individual who holds the health care proxy, and periodically revisit these choices. Here is a good time to ask: “In the future, when care is palliative, where and how do I want to die? Do I want hospice care?” The earlier and more open these conversations occur, the easier it is not only to put the decisions that you make into action happen but, more importantly, to make every moment count.