Starting the Conversation
The most common comment that HFA hears from patients and families is that they wish they had experienced hospice care earlier in the illness.
As with any important decision, an open, frank discussion that isn’t occurring in the midst of a crisis can be helpful. If you plan a discussion with loved ones about your preferences regarding medical care should you become unable to make decisions for yourself – called an advance directive - HFA recommends expanding the discussion to include your preferences for end-of-life care.
There are many ways to start the conversation about end-of-life preferences:
- Watch the PBS Frontline documentary Being Mortal with loved ones.
- The Hello game, available from Common Practice, can provide a way to easily discuss issues that are difficult to bring up.
- Five Wishes, when completed with a loved one, can lead to conversations about care preferences.
- A "Starter Kit" with tools and tips can be found at theconversationproject.org.
Many experts recommend having such a conversation around holidays, when family is gathered together. And some people may find it easier to skip the conversation altogether and to record their preferences in a living will, dated letter, other legal document, or even an email.
You can 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 can always change your mind about your course of treatment and type of care at a later date.
If 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 discussion about treatment and care. Sometimes, a healthcare provider does not suggest alternatives to curative efforts. It is then incumbent on you to raise the issue with your provider. Remember that anyone associated with your care may be helpful in this case. If you are more comfortable discussing these issues with a nurse, a nurse's aide, or a physician's assistant than with your physician, start there and ask them to help.
Suggested questions to start a conversation
Over HFA's history, our staff and consultants have spoken with many individuals about their end-of-life preferences. From those conversations, we have compiled a list of questions that can guide a conversation about end-of-life care:
- What do you value most about your life?
- If you were diagnosed with an illness that could not be cured, would you still want to pursue every possible treatment, realizing that some could 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 an extended hospitalization, nursing homes?
- Do you want to die in your home?
- How much pain is acceptable to you?
- Would you want to be pain free even if it meant trading comfort for wakefulness or alertness?
- 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 your 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 if you had one?
- 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 options informs both a conversation and a decision, whether you decide to:
Continue efforts to cure
Some people do not want to stop attempts to cure or treat an illness or condition until death occurs, although there is a chance that such attempts may become emotionally and financially stressful and physically intolerable. At some point in the course of illness, curative treatment may need to come to a halt because the person cannot physically withstand, for example, additional surgery or chemotherapy.
Receive palliative care alongside of curative care or receive palliative care alone
Palliative care, or pain and symptom management and relief, can be administered in conjunction with curative treatment if palliative care expertise is available in your area. This may be a good option for individuals uncertain of prognosis or not ready or willing to stop curative efforts. Some people may need or opt for palliative care early in their illness while they are receiving curative treatment and move later into hospice care. In fact, hospice clinicians are expert palliative care providers and many hospices now offer palliative care service 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, including at a patient's residence.
Choose hospice care, opting for comfort measures that support both you and your family
Hospice care provides care to the patient and the entire family unit. With hospice, curative attempts are replaced by palliative care to eliminate or greatly reduce pain and symptoms associated with the illness. Hospice also provides supplies and equipment (such as a hospital bed or oxygen), seeking 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 residence, which is broadly defined. Hospice care offers its range of services for a variety of illnesses and conditions through a team approach, offering a package that is physically, physiologically, socially and spiritually supportive. Patients and families can choose to use some or all of the services offered. Hospice also offers bereavement counseling to family members for at least a year following a death. Studies have shown that in some cases, hospice care can extend a person's life expectancy.
At the present time, curative treatment cannot be provided with hospice care, but the federal government is running trial programs to test the idea. Hospice Foundation of America supports this effort.
Speaking with loved ones
Discussing a care path or 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 such discussion. It is better to initiate such discussions as soon as possible.