Starting the Conversation About Hospice
So many patients and families say that they wish they had experienced hospice care much earlier in their illness. Why didn’t they? Many reasons. But one reason is that they just didn’t talk about it. It’s so important to start the conversation about hospice with the ones you love.
As with any important decision, an open, honest conversation that isn’t occurring in the midst of a crisis can be helpful. If you plan a conversation with loved ones about your preferences regarding medical care should you become unable to make decisions for yourself – called an advance directive – we recommend expanding the conversation about hospice to include your preferences for end-of-life care. Start the conversation about hospice today.
Take a look at some of these resources that might help start the conversation about hospice and end-of-life preferences. These are great conversation facilitation tools:
Watch the PBS Frontline documentary Being Mortal with loved ones.
Dr. Atul Gawande explores death, dying and why even doctors struggle to discuss being mortal with patients, in this Emmy-nominated documentary.
“Aging and dying — you can’t fix those,” says Dr. Gawande. This film looks at the relationships between doctors and patients nearing the end of life, and how the medical profession can better help people navigate mortality. The ultimate goal, after all, is not a good death but a good life — to the very end.
Play the Hello Game with loved ones.
The Hello game, available from Common Practice, can provide a way to easily discuss issues that are difficult to bring up.
Many experts recommend having such a conversation around the holidays. It’s at this time when families gather together. Some may find it easier to skip the conversation altogether and to record their preferences in a living will, other legal document, or even a simple email.
Furthermore, you may also speak with your healthcare provider about your preferences and options during a routine appointment. As long as you can competently communicate, none of your decisions are permanent. You may always change your mind about your course of treatment and type of care at a later date.
In the case that the conversation does not happen until an advanced serious illness or condition exists, which is often the case, you (as either a patient or a surrogate) or a healthcare provider may initiate the conversation about treatment and care.
There are times that a healthcare provider does not suggest alternatives to curative efforts. In that situation, it is important that you bring up the issue with your provider. Anyone associated with your care may be helpful in this case. If you are more comfortable discussing these issues with a nurse, start there and ask them to help you.
Suggested questions to start a conversation
Take a look at this list of questions. This may help guide you into a conversation about end-of-life care with your loved one:
Questions about Life
What do you value most about your life?
What do you love about life?
Who did you most look up to?
What was your greatest moment?
What was your greatest treasure?
Questions about Medical Care
If you were diagnosed with an illness that could not be cured, would you still want to pursue every possible treatment? What if that might negatively affect your quality of life?
Do you imagine wanting to stop curative efforts if they were to be unsuccessful?
If you were unable to eat or drink due to a terminal illness, would you want artificial nutrition and hydration even if it could cause complications and might not help you live longer?
Understanding Cardiopulmonary Resuscitation (CPR) could result in broken bones and other medical problems, would you want it if you were dying from an illness and were extremely frail?
If you could not breathe on your own, would you want mechanical ventilation?
How do you feel about extended hospitalization?
What do you feel about nursing homes?
How much pain is acceptable to you?
Would you want to be pain free even if it meant trading comfort for wakefulness or alertness?
Questions About Death
Where would you like to die?
Would you want to die in your home?
Do you want to be with your family when you die?
What decisions regarding care do you want to entrust to others and who do you want to designate to make decisions?
Have you shared your care preferences with that person and taken necessary steps to ensure he/she is recognized as a proxy?
Do you want a funeral, memorial service or obituary?
What would you want a service to be like? For example, what music would you want at your funeral or memorial service?
Would you want your body to be buried, cremated, donated to science?
If you had organs that could be donated to help others or science, would you want to do that?
What do you hope for most regarding your death or the death of a loved one?
What are the options?
There are three basic care options to consider if you or a loved one is facing a diagnosis that has a poor prognosis. Spiritual, cultural, social and economic diversity may influence your thinking and preferences. Yet often, it is a lack of information that precludes an informed conversation and decision. Understanding your options informs both a conversation and a decision, whether you decide to:
Continue Efforts Toward a Cure
Some people do not want to stop attempts to cure or treat an illness or condition until death occurs. Although there is a possibility that these attempts may become emotionally and financially stressful and physically intolerable. At some point in the course of illness, curative treatment may need to cease because the patient cannot physically endure, for example, additional surgery or chemotherapy.
Begin Palliative Care
Palliative care, or pain and symptom management and relief, can be administered in conjunction with curative treatment. This is the case if palliative care expertise is available in your area. This may be the right option for those who are uncertain of prognosis or not ready to stop curative efforts. Some people may need palliative care early in their illness while they are receiving curative treatment and move into hospice care later. In fact, hospice clinicians are often expert palliative care providers and many hospices now offer palliative care services that are distinct from their hospice services. Palliative care may also be provided if curative efforts stop, and it may be administered in an outpatient or inpatient basis. It may also be administered at a patient’s home.
Begin Hospice Care
Hospice care provides care to the patient and the entire family unit. When choosing hospice, curative attempts are replaced by palliative care to reduce pain and symptoms associated with the illness. Hospice also provides supplies and equipment (such as a hospital bed or oxygen). Hospice care seeks to improve the quality of life of the patient while also supporting the family helping to care for the patient. Most hospice care is provided at a person’s home. Hospice care offers a range of services for a variety of illnesses and conditions through a team approach. Hospice can also offer bereavement counseling to family members for over a year following a death.
Speaking with Loved Ones
Discussing a care path may be a challenging conversation. Discussing a change in the goal for care may be difficult for family members and close friends. Unless they have had a previous experience with someone living with advanced, progressive illness, they may be frightened, stressed and exhausted. Families and friends may not be familiar with hospice and all that it can do for both the patient and the caregiver(s). Hospice professionals are experienced in dealing with such circumstances and can help facilitate conversations like this.
We believe that it is best to start the conversation as soon as possible.