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Looking Into Hospice Care How to Choose a Hospice Calling for Palliative Care For Caregivers: Letting Go For More Information

Case Description

"I think this week has changed me, I really believed that he was going to get stronger. ... So I think now I'm scared." --Debbie Moloney

John Moloney and his family have just come to the realization that he will not survive his illness. They face the difficult tasks of letting go: letting go of life, family and friends; hopes and aspirations; daily routines; and the hope for a cure. Sometimes these changes occur gradually, but often they seem to happen overnight. Decisions about stopping treatments -- and preparing to face death -- can be difficult to make and to hear. Watch the video and explore more about care options to help support your dying.

As much as we want to fight disease and pursue treatment, we also want to have opportunities for finding meaning, comfort and hope as we die. Coping with a serious illness can be fraught with difficult decisions, and having to make them can be a lonely and trying process for patients, their loved ones and their doctors. In John's case, he is willing to do anything to survive. He and his family hoped he would get stronger and be able to continue treatments, but he is devastated to learn that he is now at the end of his treatment options and in need of a different kind of care to support his dying process.

 

Looking Into Hospice Care

As in John Moloney's case, your doctors may think you are a candidate for hospice care, an interdisciplinary approach to caring for people who are near the end of life. Hospice services may be provided in your home but may also be provided in hospice centers, nursing homes and other long-term care facilities. Hospice services provide patients and families with medical care that focuses not only on symptom control and pain management, but emotional and spiritual support as well. Although hospice caregiving teams always include a hospice physician, comprehensive care is also provided by nurses, social workers, chaplains and volunteers, who all help the family cope with illness and approaching death. Hospice takes a person-centered approach to care, focusing on the overall well-being of the whole patient and family, not just on the disease and its treatment.

 

How to Choose a Hospice

Medicare covers most hospice services, which can also be covered by private insurance and Medicaid. To enroll in a Medicare-certified hospice, you must meet certain criteria: You must have six months or less to live, and you must agree to forgo curative treatments. Some insurers are experimenting with offering hospice services to people who have longer to live or who want to continue curative treatments. Check with your insurance company to find out what kinds of benefits it offers. Depending on where you live, you may have more than one hospice program from which to choose. In making your decision, consider the following questions:

  • Which hospice does my doctor recommend, and why?
  • Do my friends, family and neighbors have experience with a local hospice? Which do they recommend?
  • Do I have a family member who can be my primary caregiver?
  • What kinds of services does the hospice provide? What will it not provide?
  • How often will I see my doctor or nurse?
  • Hospice services are offered mostly in the home, but will there be times when I will need to be in a facility? If I do need hospice inpatient services, where will I be sent?
  • Does the hospice have around-the-clock access to nurses who are available by phone or in person? Will they have any of my medical records?
  • Will an emergency medication kit be set up in my home?
  • What kind of support or services does the program offer to my family?
  • Does the hospice work with residents in nursing homes or other facilities?

Downloadable Resource: PDF Handout: Choosing a Hospice

 

Calling for Palliative Care

Patients at this stage in their illness may also want to talk to their doctors about getting palliative care. One option for doing this is to seek hospital-based palliative care.

What to Expect From Palliative Care

  • Palliative care provides symptom control, psychosocial support and comfort measures, which can be provided along with treatments aimed to modify the course of the illness.
  • Many hospitals -- and all veterans' medical centers -- offer palliative medicine programs and services. Some hospitals have a dedicated unit or program; others rely on palliative care consultations by specially trained physicians or advance practice nurses.
  • Comprehensive, coordinated palliative care will help you to manage discharge planning, working with you to set up home-based care such as hospice.
  • Palliative care services offer resources and supports for patients and families by focusing not only on the treatment of the disease's symptoms, but on how to live well despite the disease, and how to better cope with the physical and emotional experience of illness and dying.

Downloadable Resource: What Should You Know About Palliative Care? (PDF) from the Center to Advance Palliative Care

 

Psychological Support for Patients and Families

Over time, as your illness worsens, you will find that you endure, but also that you change significantly. Most people experience profound changes not only in their appearance, but also in their emotions, their ability to function on their own and their energy level. Many care teams are now researching how to help patients and families cope with the anxiety and depression that can sometimes accompany living with a serious illness. Your doctor can work with behavioral health experts to treat these symptoms and to manage clinical depression.

Although not all patients experience anxiety and depression, many do. In fact, some illnesses and medications can predispose people to depression. Depression goes beyond sadness: It is the complete loss of joy or pleasure in your life. Symptoms may be hard to distinguish from your illness, such as changes in your appetite and energy level, so it is important to tell your doctor if you are feeling depressed or anxious. People who are depressed may feel extremely isolated and lonely, guilty and hopeless. People troubled by anxiety may find themselves overwhelmed with worry, unable to get their thoughts on another track. Medications can help. So, too, can talking to a therapist or psychiatrist; for older patients, specially trained geriatric psychiatrists are a good resource. Family members, too, may struggle with depression and anxiety, and can find support and guidance by talking to the hospice and palliative care teams about resources and referrals in the community.

 

For the Caregiver: Letting Go

By the time your loved one reaches the end of life, even the most loving families and dedicated caregivers are often drained, exhausted and confused. Take care of yourself, too. Counseling or support groups, either in person or online, can offer support and reassurance to endure and to address feelings of isolation, depression and grief. According to the Family Caregiver Alliance, learning to let go is especially important. To do so, you need to:

  • Come to feel that letting go of a loved one is NOT the same as wanting him or her to die.
  • Acknowledge that the person is dying. It can be hard to come to terms with the fact that the end has come, but it is inevitable.

Downloadable Resource: Holding On and Letting Go (PDF)

 

For More Information

 

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posted november 10, 2010

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