FAQ - When Your Dying Friend Needs Help

Hospice Foundation of America

Q1: My co-worker's spouse has been diagnosed with a terminal illness. We are very close and I've told them to call if they need anything, but that seems too impersonal. What do I say or what can I do?

A1: When a friend is coping with a loved one's or her own imminent death, you may not know what to say or how to respond. It is common to feel overwhelmed, self-conscious, or to fear saying the "wrong" thing. However, this may prevent you from giving the love and support that your friend may need. When you feel at a loss, try to follow these few basic principles:

• Offer your support
  Support can be offered in a tangible way, such as bringing a meal to your friend's house or running errands. Support can also be shown by just listening to your friend.
• Follow their lead
  Your co-worker will sometimes need to talk about his or her experience, and other times will choose not to. Remember that keeping a sense of normalcy is important; whatever you talked about before is appropriate now.
• When in doubt, ask your friend how you can best offer your help and support.
• Contact HFA at 1-800-854-3402 to request a complimentary copy of the brochure, "Living With Grief: At Work." You may try contacting your local hospice and speaking with a hospice bereavement counselor.

Q2: A few weeks ago, my friend who has breast cancer started hospice care. I have not called her because I am unsure of how to help. I feel like there's so much to say. But, I'm afraid my emotion may upset her, make me seem selfish, or be a burden on her family. How do I support someone who is dying?

A2: Hospice care is special because families and friends are able to offer critical support while a patient experiences the very difficult process of dying. However, the terminally ill often feel a sense of abandonment when they choose hospice, because the loved ones who should be supporting the dying are not sure of how to express themselves. When you feel awkward or helpless, follow these steps given in HFA's informational brochure, "Supporting Your Friend through Illness & Loss."

• Venture
  Convey your empathy and show your interest and concern. Acknowledge opportunities for conversation. A simple "how are you doing?" can convey your interest and concern. After the initial response, follow your friend's lead. Sometimes he may want to talk about the experience, while other times he might want to avoid the issue.
• Validate
  Respect and validate difficult feelings, fears, and sad thoughts. Rather than saying, "You should not feel guilty, angry, or afraid," let the person express those feelings. Asking "What makes you angry?" or "I understand you're frightened," allows individuals to further explore their feelings. Share advice when asked, but mostly listen.
• Volunteer
  Help in tangible ways and volunteer to do specific things. It is not enough to say, "Is there anything I can do?" A person living with illness or caring for someone who is, may be too stressed to consider how you might help, or might believe you are just trying to be polite. Tangible acts such as cooking food, helping with chores, or assisting in caregiving, can mean so much to friends in crisis.

DO NOT RESUSCITATE (DNR) AND OTHER ADVANCE DIRECTIVES

Q3: Legally, if a person is active under hospice services should there be a physician order for "DNR?"

A3: Patients do not need to have a DNR order signed at the time of their enrollment into hospice. Often, physicians rely on hospice to get a DNR order because they are reluctant to hold the discussion with patients themselves. If DNR were a legal requirement, referrals to hospice would be postponed and length of hospital stay would be even more dismal than it already is. However, hospice staff will work with the family to determine the best time to have a DNR order signed after enrollment.

Hospices should make it clear to patients that hospice election means giving up aggressive treatments and accepting that death is approaching. But, there is no legal requirement to force this choice by signing a DNR before admission. In practice, many hospices choose not to be so blunt, and give patients and families time to adjust to the terminal illness and prognosis, even paying in some cases for life-extending treatment such as chemotherapy and radiation.

Additional information about advance directives and an emergency profile form that may be helpful to you and your family are available from Hospice Foundation of America. Your local hospice, hospital or physician should also be able to provide you with more information on completing these important documents.

CHOOSING HOSPICE CARE AND SELECTING A HOSPICE

Q4: Is hospice just a place to go to die when there is nothing else your doctor can do?

A4: There are many myths about hospice that may prevent patients and families who would benefit from hospice care from seeking out the support that hospice can provide. Choosing hospice is a movement into another mode of care-giving when a terminal illness no longer responds to cure-oriented treatments.

Q5: How do you know when hospice is appropriate?

A5: The patient, family and/or physician can initiate a hospice information/referral call or visit as soon as a terminal disease is diagnosed. When the patient would like to move from a treatment plan focused on curing the disease to a plan focused on providing comfort and relief, they may choose hospice care. At this point, the local hospice workers will meet with the patient's personal physician, the patient, and the family to discuss available services and expectations, and to develop a plan of care designed specifically for the patient and family needs.

Q6: What are some of the questions I should ask when selecting a hospice? Is there a set of criteria that can help in my decision?

A6: Individuals will have different medical, financial, emotional and spiritual needs when dealing with a life-limiting illness. When choosing hospice, it is important to be honest about your family's own needs and feelings. Then, you may want to ask questions about insurance plans and payment requirements. Ask what expectations the hospice will have from the patient and the patient's support system. Ask what kind of support and training program the hospice has for caregivers. Also, ask about bereavement support programs.

Q7: My father has cancer and his physician has recommended hospice. My family has very little financial resources. How is hospice care paid for?

A7: Hospice care is a covered benefit under Medicare for patients with a prognosis of 6 months or less. Medicaid covers hospice services in most states. Many private health insurance policies and HMO's offer hospice coverage and benefits. Hospice services are also covered under TRICARE. Frequently, hospice expenses are less than conventional care expenses during the last six months of life.

GRIEF SUPPORT AND OTHER RESOURCE ORGANIZATIONS

Q8: My wife recently died after a prolonged illness. Do you have additional information on grief and bereavement that can help me understand what I'm going through?

A8: Bereavement counseling is integral to the hospice philosophy of care. In addition, many hospices serve as grief resource centers to their local community. For some basic information about loss, please visit the Grief & Loss section of the HFA web site.

Q9: My mother is a hospice volunteer and told me that there are grief support programs available through hospice. She said that sometimes groups are loss specific. Can you tell me how I may find local information on available grief support programs? How do I find help for a specific loss like the loss of a spouse?

A9: The best way to find local grief support information is to contact some of the local hospice programs in your area. Explain to them that you may be looking for support for a specific loss. They may know who to refer you to in your area.

Q10: I would like to put together a resource list of organizations offering information and support on a variety of healthcare and other issues that I can share with my staff. Can you provide a general list of resources that are available?

A10: In addition to promoting the hospice philosophy of care, Hospice Foundation of America offers a listing of other resource organizations that are useful in all areas of a community. We have compiled a list of organizations which may be helpful.

VOLUNTEERING/EMPLOYMENT WITH HOSPICE

Q11: I would like to volunteer with a hospice organization in my community. What questions should I ask to determine whether or not volunteering for hospice is right for me?

A11: One of the most important aspects of hospice care is its use of volunteers. As you question whether being a hospice volunteer is for you, you should consider a few questions. Can you handle the loss of many of those who you help? Are you comfortable with your own mortality? Can you make a commitment to be there for others? You should speak with your local hospice and determine their needs and the tasks that they may ask you to assist with.

Q12: Can you give me an idea of the qualifications and expectations of hospice volunteers?

A12: People who volunteer for hospice possess a variety of skills and talents; there are not specific qualifications. They simply need to care and commit. National standards and regulations define basic services delivered by a hospice. However, volunteer services vary with the locations, size and scope of service offered by a particular hospice. However, most hospices may ask you to provide hands-on care to dying patients, do administrative work in the office, drive patients to appointments, teach bereavement support classes, or provide professional services.

Q13: What are some of the requirements to work for Hospice? I would like information on finding employment opportunities.

A13: The best way to find out about employment opportunities with hospice is to contact a local hospice in your area. Also, you may want to contact the National Hospice & Palliative Care Organization to find out more about working for hospice and local contact information.

PHYSICIAN ASSISTED SUICIDE AND EUTHANASIA

Q14: What is the hospice stance on PAS and euthanasia?

A14: Hospice neither prolongs life nor hastens death. A good resource is Jack D. Gordon's article, "Assisted Suicide: Hospice Care as a Merciful Alternative,"

CULTURE AND HOSPICE CARE

Q15: Could you please provide me with information or resources regarding hospice care and cultural diversity? I would like to learn more about caring for patients from a culture different from my own.

A15: The issues of age, gender, ethnic background, religious beliefs, class, and educational background can become especially difficult when accompanied by the needs and issues of dying and bereavement. These differences affect the use of hospice as well as hospice workers. It is essential that hospice workers and caregivers listen carefully, ask questions, and respect beliefs, rituals or ideas that may be different from their own. Some of the questions and concerns regarding diversity and hospice care are addressed in Hospice Foundation of America's book Living With Grief: Who We Are, How We Grieve. Also you may view some of HFA's links to other organizations, such as Growth House, and contact them to find out about diversity and grief.

PREPARATION FOR THE FINAL STAGES OF DEATH

Q16: My brother is on morphine and is experiencing uncontrollable shivering at times. We believe that this is symptomatic of his body shutting down. How do we know if this is true? Are there certain stages that someone goes through as they experience the dying process?

A16: When someone is entering the final stages of the dying process, they experience a shutdown process both emotionally/spiritually, and physically. The hospice providing care to your loved one should be able to provide you with some information about signs of approaching death. HFA's booklet, The Dying Process: A Guide for Caregivers, contains valuable information concerning the physical and emotional signs of impending death.