By Justin Buchbinder and Nicole Levison

No one wants to talk about death. Talking about it may be uncomfortable, painful, and depressing. But death, both our own and the death of our loved ones, is something we all face. For those who care for the terminally ill, the issues of death and dying are very real. Death and grief are some of the most important subjects to discuss.

When a loved one is approaching the final stages of a terminal illness, beyond the ability of medicine and doctors, he or she may decide to return home to be with family. In this period of time, both the caregiver and the care recipient will require a lot of mental, emotional, and even spiritual support. Hospice may be a very helpful answer to both the caregiver and their loved one’s problems.

What is Hospice Care?

Hospice care is the care for a loved one in their home (mostly—there are some inpatient hospice centers), typically in the last few months, weeks, or days before their death. When Hospice care begins, a nurse helps to ease the pain and suffering of a terminally ill patient. Many people think of “Hospice” as a place where terminally ill patients are sent; this is not always the case. The roots of the term hospice actually come from the medieval concept of providing rest and comfort to the sick and dying.

Hospices believe in the notion of Palliative Care, which emphasizes the improvement of the patient’s quality of life, rather than the quantity of their life. Instead of trying to extend life, a Hospice care plan seeks to enrich and fill the patient’s days with peace and comfort.

But patients are not the only focus point of Palliative Care. Hospice care professionals and volunteers will come to the home to provide solace and comfort for the patient and their family. Hospice care seeks to ease the pain of the sick while giving them and their family physical, spiritual, social, and emotional support.

When your loved one is nearing the end of their life, they may be in great pain. They make discomforting sounds and noises, and they may even appear to be having difficulty breathing. They may not realize who you are or where they are in their final moments. While you could be imagining a peaceful death, with your loved one just slipping away, the reality may be much more jarring, confusing, and upsetting.

A hospice nurse or aide can help explain and prepare you for what is going to happen. The end of your loved one’s life may be extremely difficult for you, but hospice workers are incredibly lovely and calming people. Consider letting them help you at this really difficult time.

What is Grief?

When we lose a loved one, we grieve. Caregivers may grieve even more than others, because of the length of time we spent with our loved ones, and the nature of our time spent together. But grieving is not a textbook reaction. We each grieve in a completely different way. In the beginning we may experience shock and disbelief. This initial reaction may lead to depression, anxiety, and even anger. The stages of grief may advance in as little as a week or as long as a year.

Community Hospices, (www.communityhospices.org) a non-profit organization serving Maryland, Virginia, and Washington D.C., has a wonderful online guide to some of the common stages of grief, and how to cope with each stage. 

There are ways to handle grief and losing our loved one. One of the best ways to begin the process of healing is to give ourselves permission to grieve. Attempting to bury our feelings and pain will only make our feelings stronger and more painful. Once we’ve given ourselves permission, it may help to voice our grief to others. Sharing both the happy and sad memories may help to alleviate the sense of loss. All of our feelings are part of the slow and gradual healing process.

After we lose a loved one, we may eventually leave the pain and sorrow behind. However, our loved ones will remain in our memories. Loss is something we all experience; and remembering those we have lost is a sign of the strength and depth of our love and devotion.

Who is on the hospice team?

Many different specialists and volunteers make up the whole that is hospice care. Some of the different professionals involved may include:

• Nurses, to help with pain management
• Home health aides, to help the sick with their day-to-day needs
• Social workers, to provide an ear and comfort for the sick and their family
• Chaplains or priests, to answer the spiritual needs of the patient
• Bereavement counselors, to provide early psychological and emotional preparation
• Pharmacists and physicians, to plan medication schedules and to monitor the sick

Most hospice establishments also have a 24-hour phone access for emergencies.

What Questions Should I Ask?

When choosing hospice, you may be dealing with an agency. You’ll want to ask the agency the following questions:

• Are they licensed by your state?
• Are they accredited by any national organizations?
• Will they come to your home, or will they take your loved one in?
• Do you or another family caregiver need to be present at all times?
• How are money matters (billing, payment options) handled?
• How quickly can they begin the hospice service?

The Internet has some useful resources pertaining to hospice care. To find more information, try one of the following Websites:

• www.hospicepatients.org. Hospice Patients Alliance provides detailed information on hospice.
• www.hospices.org. Contains an extensive FAQ on hospice and palliative care.
• www.hospicefoundation.org. A complete resource dedicated to all things hospice.
• www.nhpco.org. Hospice and palliative care portal.
• www.hospicenet.org. An all-around excellent source for information, including a hospice locator, FAQ, helping children cope, and more.
• www.caringinfo.org. Assists with advance care and financial planning.