Emotional and Spiritual Concerns at the End of Life
One of the most important people on the palliative care team isn't a doctor or a nurse. In fact, they don't have a medical degree at all. It's the chaplain.
A chaplain is typically an ordained minister of a particular faith -- Roman Catholic, Protestant, Jewish, Muslim, or another. On the palliative care team, they serve the spiritual needs of all patients and family members, no matter what religious belief they have or don't have.
As people near the end of life, they and their loved ones usually have important emotional and spiritual questions and concerns, and it's important they have someone to hear them.
Here are some of the emotional and spiritual concerns that many people and their families have at the end of life.
Why is this happening to me, or to my loved one?
This is by far the most common question that people facing death and their families ask. And it's not really a question; instead it's a vital emotional expression.
It can be an expression of shock or anger. And there's not a typical theological or medical answer to be given. Experts at Capital Caring, which cares for more than 1,000 people living with advance illness in the Washington D.C. area say that people don't want to talk about their feelings. They want to express them -- their grief, their shock, their sorrow. The chaplain's role is to help the patient or the family member give expression to those emotions.
What comes next?
At the end of life, people aren't usually looking for new answers to the age-old question of what happens after we die. Instead, they think about the life they have lived and what they have known in the past. The chaplain supports that reflection either directly or by going out into the community and finding what they need.
I want to tell my story.
People who are dying, or those who are losing a loved one, often want to go over the story of their life -- and their illness. The chaplain is there to let them tell their story, whether it's from the beginning or they just want to go over the diagnosis -- where they were when they heard it, what happened next -- any number of times.
I have regrets.
If your loved one is dying, have you said everything that you need to say to them? Chaplains help people prepare for death by encouraging them to write letters or to sit down with people and make peace by saying what they've been wanting to say.
Even if your loved one is very near death and not conscious, people who are dying are often aware of what you're saying. Even if you don't get words of response, it's not too late to say "I'm sorry" and "I love you."
Everyone facing the death of a loved one copes differently. Some family members will accept the news more easily and may find it difficult to be patient with others who are in denial.
The chaplain helps families understand that everyone takes in this information at different rates, and some people need more time.
In some families, old angers and hurts bubble to the surface when a death is near. The chaplain is someone removed from the family. So the chaplain can be a neutral, safe facilitator to help people talk out their issues.
Even if you and your family do not have a religious faith, a palliative care chaplain can be helpful.
As Death Approaches
People are often anxious about what to expect as death approaches, but a palliative care team, including the doctors, nurses, and social workers as well as the chaplain, can help you prepare for the stages of death and dying. These stages can vary depending on the type of illness and other factors, but they are still very common.
As the body's systems weaken in the months before death, people tend to become less active and begin to look inward. They start to withdraw from the world around them and often use this stepping back as a way of preparing.
People tend to become less interested in food as death approaches. This may feel strange. But even though one of our main ways to comfort people is to feed them, there comes a point when the body is simply not able to digest the food it's given.
A couple of weeks before death, people can become disoriented. Days and nights switch, and sometimes they can't keep their eyes open. Other times they can't fall asleep. This can be particularly hard on caregivers.
Within a few days or hours before death, there might be what palliative care professionals call "terminal agitation." It's a kind of energy or restlessness that might be expressed as "I need to get out of here." If your loved one is deeply confused and distressed, the palliative care team can offer a sedative that will ease this transitional symptom.
Most people with a terminal illness become unconscious in the last few hours or even days before death. But that doesn't necessarily mean they don't know you are there. Many palliative care and hospice professionals will tell you that hearing is often the last sense to go at the end of life.
Well after your loved one can no longer speak, they can still hear you say, "I love you."