Discussing Hospice

How to Begin the Conversation about Hospice

We often feel uncomfortable, even when a family member is dying, to begin a conversation about hospice. Yet, that conversation is a critical one for a number of reasons. First, hospice can offer vital services not only for the person who is dying but also for the entire family. Second, hospice may allow the possibility for the person to remain where they are – perhaps at home, in an assisted-living facility, or even a nursing home – sparing them a move to an unfamiliar hospital. Third, even at the end-of-life, anyone capable of making decisions retain the right to make decisions about his or her care. This allows the individual the dignity to decide – a right that is even more important as other aspects of life that the person can control become more limited.

This conversation should begin with the treating physician. It is appropriate to ask whether hospice is an option. Hospice is an available option when the care goal is now palliative. This means that treatment is focused on keeping the patient comfortable rather than curing the person or needlessly extending life. Opening this conversation with your physician allows the doctor to understand your family’s concerns and wishes. Even if the goal is not yet palliative, it provides an opportunity for you or physician to broach that topic 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 as well. 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, these are best not left until a person is dying. 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 are, the easier it is not only to have the decisions that you wish implemented but more important to live as you want until you die*.

To learn more about choosing hospice you can contact your local hospice by searching the directory or click here to order information on hospice and bereavement.

* Written especially for HospiceDirectory.org by Ken Doka, PhD, MDiv. Professor of Gerontology, College of New Rochelle; Ordained Lutheran Minister; Past President, Association for Death Education and Counseling; Former Chair, International Workgroup on Death Dying and Bereavement; Editor, Omega: The Journal of Death and Dying and Journeys (bereavement newsletter); Bereavement Consultant, Hospice Foundation of America.