Hospice - The Anticipation of Grief

Death is not always sudden. When a loved one has a serious or terminal illness, it can seem like you are watching them fade away right before your eyes. An extended illness often provides loved ones with the chance to say goodbye. It also carries a unique kind of grief, as you see your loved one lose abilities and perhaps even parts of his or her personality.

Grief does not wait for the last breath or the closing of the casket. It can come knocking as soon as we are aware of an impending loss. Anticipatory grief is the term that we use for feelings surrounding a future loss. Anticipatory grief often starts with a terminal diagnosis or a poor prognosis. We are now faced with the prospect of losing our loved one, and need to cope with both the current reality of caring for someone who is seriously ill, and the prospect of a future without him or her. Anticipatory grief can also be experienced by the person who is dying. It includes the feelings and reactions one may have to their own impending death and the many associated losses and changes.

Anticipatory grief is similar to the grief that comes after a death in many ways. It can include feelings of sadness, shock, anger, denial, bargaining, acceptance, and guilt. Anticipatory grief also has the added strain of expectation and vigilance, which can exacerbate feelings of stress and exhaustion.

We are commonly told not to make important decisions when grieving, yet families who have been given a serious, life-threatening prognosis are being asked to do exactly that- make serious decisions about their future healthcare while experiencing anticipatory grief.

When a family is facing difficult healthcare decisions related to end-of-life care, it is a complicated and challenging time. It is common to disagree on what is the right approach, the right treatment, or even whether or not to seek hospice services. The most important thing for patients and families to do during this time is to find a way to communicate and to really listen to each other. People with a terminal illness have many concerns, hopes, fears, and desires. Prolonging life is not always their most important priority. It may actually be spending quality time with family, avoiding suffering, being as alert as possible, being able to make decisions, or feeling connected with others.

It takes a tremendous amount of courage to have these conversations. When someone is seriously ill, he or she may be frightened and exhausted. Caregivers and family members are also likely stressed out and drained. Even medical professionals may avoid direct conversations about end-of-life wishes. But what is almost universal is the feeling of regret by people who avoid these conversations and face an end-of-life experience that does not reflect their wishes or values.

The best time to have conversations about end-of-life wishes is before you or a family member are faced with a health crisis. If that time has already come, it is important to have an open and honest conversation as soon as possible. Choice and control are a vital part of our perception of wellbeing, so think of this conversation as a gift- the gift of choice and the gift of a voice.

Things that may help the conversation:

• Find the right setting. A quiet, comfortable place that is free from distraction is best. Think about who should be present and set some ground rules if you feel one person may dominate the conversation.
• Discuss the range of options. This may include the option to continue aggressive, curative treatments. There may be an option to receive palliative care (pain and symptom relief) along with curative care, or to receive palliative care alone. Hospice is another type of care available to people whose physician has given them a prognosis of six months or less. It provides comprehensive services that address physical, emotional, and spiritual needs.
  • Unsure about the difference between hospice and palliative care? https://www.nia.nih.gov/health/publication/end-life-helping-comfort-and-care/care-options-end-life
• Ask what is most important to them, and let them lead the conversation. You might be surprised that people’s priorities change when they are seriously ill. They may have always been a “fighter,” but now what they want to fight for is the ability to die at home, or they might have fears about what will happen after they die that you can help alleviate.
• If there are significant disagreements between family members about what should happen, bring in a professional social worker, chaplain, or spiritual advisor to help navigate these challenges. Having a neutral third party can help all those involved feel heard, bring clarity, and provide resolution.
• Recognize that hospice and palliative care do not mean “giving up.” Changing or stopping treatments might mean letting go of the expectation of being cured, but it may open up the possibility of living in a way that embraces your loved one’s current values and priorities. Palliative treatments can often be provided alongside curative ones, and studies have shown that hospice care can actually extend a person’s life expectancy.

For more information about starting a conversation about wishes for end of life care, visit: http://theconversationproject.org