Hospice: Emotional and Spiritual Care

Hospice care offers emotional and spiritual support for both survivors and their loved ones.  Each survivor’s experience at the end of life will be unique.   Some individuals have many loved ones or friends around them while others may take comfort in the support provided by caring hospice staff members or volunteers.  Hospice intends to provide a peaceful environment for any survivor regardless of his or her situation.  The social worker, chaplain, and sometimes other hospice team members help provide emotional and spiritual support. 

Social workers, if requested, answer questions and help loved ones talk about how they are feeling and what they are experiencing.  Should tensions arise among family members or loved ones, the social worker can offer assistance in discussing difficult issues.

The hospice chaplain, if requested, can work alone or with the family’s spiritual advisors to answer questions and guide conversations about the meaning of life, death, and other faith-based issues the survivor and loved ones may want to discuss.  Both the social worker and chaplain also offer caring companionship, lead discussions about death and dying, and assist with grief and bereavement.

Survivors and their loved ones are often in different places emotionally when hospice care begins.  Patience and respect are most helpful for all involved. 

At first, survivors may know that it is time for hospice care, but still feel a little overwhelmed that the end of life is near.  Survivors and their loved ones may experience many types of emotions, both expected and unexpected, and these emotions may come and go without warning, including:

• denial about death
• fear and anxiety of the unknown, the future and separation
• anger that cancer is taking away life
• guilt about lifestyle habits that may have affected health (i.e.  smoking)
• grief and tremendous sadness      
• relief that the pain and suffering are nearly over
• peace and acceptance

The hospice journey can be a tremendously sad time for everyone and the emotions are often intense.  Some families are able to use their remaining time together to grow closer.  They celebrate the life they have shared by talking, laughing, telling stories, and being open about their feelings, perhaps as never before.  Everyone deals with dying and death differently.  There is no right or wrong way. 

Providing hospice care can affect survivors in both physical and emotional ways.  Survivors may have trouble sleeping which can lead to fatigue.  The fatigue, in turn, can make negative feelings worse and even result in depression.  Caregivers or loved ones who become emotionally overwhelmed may be helped by the hospice social worker or by a referral to a therapist.

It is a good idea for survivors to talk with hospice staff about emotions regarding hospice care, as well as willingness or ability to have loved ones present.  These factors may affect overall quality of life.  Hospice staff are both willing and able to help manage these challenges.

Knowing what a survivor is thinking or feeling near the end of life is very difficult to determine.  However, most emotional changes are accompanied by physical changes that caregivers need to watch for and discuss with the hospice staff, including:

When a person is near end-of-life, other physical symptoms include:

• irregular breathing
• rattling sounds when breathing
• skin becomes cool to the touch
• decreased need for food and/or fluids
• drowsiness, increased sleep, and/or unresponsiveness
• involuntary movements
• darkened urine and decreased amount of urine

Poor pain management can lead to or worsen emotional issues.  Medications can also cause these issues.  Some symptoms, such as sadness, are common and can be part of the dying process for the individual.

The primary caregiver and the survivor’s family are invited and welcome to talk about their feelings with the hospice nurse, social worker, and chaplain.

Because caregiving is such a great responsibility, caregivers need to take care of themselves.  Otherwise, they may become physically, emotionally, and spiritually exhausted.  Caregivers may choose to share experiences and talk openly and honestly to someone other than the loved one they are caring for.  Keeping feelings or emotions inside can be harmful.  Expressing and sharing them can be freeing.  Find someone to talk with and cry with, someone who will just listen and not judge.

Caregivers may also want to continue their own spiritual practices and routines and talk with the hospice chaplain, their own spiritual advisor, or a social worker about personal questions.

Hospice provides families and loved ones with bereavement support free of charge for one year after a death.  Caregivers will receive letters and phone calls on a regular basis during this time.  Caregivers will have opportunities to participate in grief support groups or individual counseling (if offered) and the option to hold memorial services.  Special counseling services are sometimes available for children and friends who have lost loved ones. 

Discussing Memorial Services
Discussing funeral or memorial services can be extremely difficult. Some people facing end of life want to talk about these arrangements and discuss what music, rituals, or readings would be most meaningful to them. Others, however, are not comfortable discussing these things and prefer to leave all decisions to their loved ones.

Hospice staff, social workers and faith-based advisors are available to talk to survivors and their loved ones to find out whether a discussion about funeral or memorial planning is wanted. If the survivor does not want to discuss such plans, his or her feelings should be respected. Families and other loved ones can make appropriate arrangements when the time comes.

It is also important to make sure that a caregiver or other family member knows the location of the survivor’s important legal and financial documents that will be needed to make funeral arrangements and settle the estate. Some caregivers or family members who do not know where these documents are stored may be concerned that asking the survivor about them will be upsetting. In this case, family members may ask if a hospice staff member or social worker can talk to the survivor about it.

In addition to the hospice team, legal or financial advisors can help finalize details of the survivor’s will. They can also work with families to prepare for their financial future.

The information and services provided by the Pancreatic Cancer Action Network, Inc. are for informational purposes only.  The information and services are not intended to be substitutes for professional medical advice, diagnosis or treatment.  If you are ill, or suspect that you are ill, see a doctor immediately!  The Pancreatic Cancer Action Network does not recommend nor endorse any specific physicians, products or treatments even though they may be mentioned on this site.  111230