Hospice Patients Alliance: Consumer Advocacy


Grieving for the loss of our loved ones begins even before the actual time of death:

We grieve for loss of the relationship, loss of the interaction,

loss of all types of support that our loved one may have given us;...

we grieve for the changes that occurred in our loved one's life

and the suffering that he or she may have gone through;

we grieve for the end of the opportunity to do the things we wanted to do together,

and we grieve at the ending of the connection

with that person here on Earth,

the ability to communicate immediately and directly;

We grieve for the end of a life together as we knew it,

not knowing the changes to come.

Grief is more than sadness, it may feel overwhelming and consuming. However, grieving is a healthy and natural reaction, and all of us go through it at one time or another. It's part of life, just as the death of this body is common to all of us. It is said that the loss of a loved one is "something that you may get used to, but you don't necessarily totally get over it." We learn to cope with it.

But grieving can lead to depression and ineffective coping. Hospices must provide bereavement support services and counseling to all family members for up to one year after the death of the hospice patient.1 This includes children as well as parents, spouses as well as siblings. The hospice counselors will evaluate the family to determine who may have a greater need for bereavement counseling. This counseling may be in the family's home or at another meeting place; the important thing to remember is that the hospice benefit includes support even after the time of your loved one's death (for up to a year and one month after).

The hospice must contact you and arrange for the bereavement services you need. This is part of why hospice is considered wholistic; it includes the needs of the whole person, the whole family unit and considers your needs on psychological and emotional levels, as well as the spiritual.

If you are feeling a need for support, please communicate that with the hospice social worker, chaplain or RN casemanager. They can arrange for the support you need to help you get through this difficult time. If you notice that another family member appears to be having a difficult time, then you should also contact your hospice representative to arrange for support. Sometimes, people, especially children, are unable to express their feelings and needs openly, perhaps because they don't know how to put those feelings into words. With children, grades in school may be affected or behavioral problems may crop up. Hospice is there to help you before, during and after the time of death, to assist you.

Other Bereavement Support Groups Are Available

If you need bereavement counseling or wish to join a support group (other than hospice-sponsored groups) you can probably find several resources. You can call the funeral homes in your area, churches often advertise these types of support groups in the "meetings" section of local newspapers or you can contact the social workers at your local hospital for referrals.

You can also contact The American Cancer Society for information on groups they know about. Many of the webring sites dealing with cancer or other terminal illnesses offer support groups, message boards and other forms of support. You can also do an internet search under "bereavement services" for your area city and state to find resources.

1 See 42 CFR 418.88(a) regarding Bereavement services (Section 7a of this text). Whether the patient resided in a facility or passed away in his own home, the hospice is required to provide bereavement counseling, even if the patient was in the facility for one day or six months.

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