For Caregivers

Palliative and Hospice Care

Palliative and Hospice Care
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Hospice Care, Comfort and Connection at the End of Life

It will be one of the hardest journeys you will ever take.

For caregivers — for anyone who is about to lose someone—preparing for the death of a loved one is hard. Few people are ever ready to say that final good bye. Providing or participating in hospice care, however, lets you spend time with and honor your loved one. While it can be challenging, this last chance to provide thoughtful care and comfort will create positive memories to think of while you are grieving later. Hospice is not so much about dying. It is more about your loved one living those last days to the fullest.

What IS hospice care?  Hospice care is also called end-of-life care. Hospice care becomes an option usually when patients are “terminal.” This means their doctors estimate they will not live longer than about six months or less. At this point, patients will choose to stop treatments to prolong life, such as chemotherapy or dialysis, and start hospice. Hospice involves day-to-day care as a patient’s illness gets worse and death nears. Care includes arrangement for or help with

  • activities of daily living (ADLs) such as dressing, eating, bathing, and walking
  • meals or feedings
  • social activities
  • quality time with family and friends
  • medical monitoring and
  • palliative care

What is palliative care?  Palliative care is a part of hospice care. It is not meant to cure patients or help them live longer. “To palliate” means to relieve. This special type of care focuses on easing a patient’s suffering, whether it is physical, psychological, emotional or spiritual.

Also, because patients can have several challenges beyond physical discomfort, a whole team of professionals coordinates palliative care. The team may include a patient’s doctors, nurses, pharmacist, allied health therapists (to help a patient breathe, get around, speak, etc), and nutritionist. Counselors may help both patients and families prepare psychologically and emotionally for their eventual loss. Religious leaders (priests, ministers, rabbis, imams) can help those want to talk about faith, God, or the complex spiritual questions that arise near a loved one’s death.

The team works with the patient and their family so everyone knows what to expect as the patient’s illness moves forward.

Where can our loved one go for hospice care?  A patient can receive hospice care at home, or in a facility that specializes in hospice care, such as a hospital unit, a specialized area in a nursing home, or a free-standing hospice. The choice depends not only on the patient, but also on relatives or friends who will be helping with or providing care. At least two doctors must certify that the patient has a terminal illness and is expected to live six months or less. The patient’s doctor will write an order for hospice care, and document why it is medically necessary. Everyone involved, you, your family, and especially your loved one, should understand your loved one’s condition and the doctor’s orders.

What if our loved one does not want treatment anymore, but the doctor says treatments will help him live longer?  It is up to your loved one. If the fight against illness has been long and hard, your loved one may simply be too tired to go on with treatments. Treatment symptoms, especially with strong drugs, can make people feel worse than the illness by itself. It is time for a very frank talk with your loved one’s doctor. Find out what the treatment options are, and what the benefits will be. Most important, will your loved one have a better quality of life? And remember: Even if you or other family members want treatment to continue, the final say is up to your loved one.

Please visit the following sites and resources for more information and tips. Also try to contact other caregivers whose loved ones are in hospice. You can develop friendships, and learn important things you had no idea to even explore.

New Jersey Hospice and Palliative Care Organization http://www.njhospice.org/

Caring.com http://www.caring.com/local/hospices-in-new-jersey

Hospice Foundation of America http://www.hospicefoundation.org/pages/page.asp?page_id=171405