The goal of Hospice care is to promote “comfort” for individuals who are approaching the end of their lives. Hospice care helps to treat pain and other symptoms so that residents and their families can focus on what is important to them with the time they have remaining.
Residents may receive Hospice services when they have a limited life expectancy of six months or less if the disease runs its normal course. Any life limiting illness may qualify, not just cancer. Residents who may be appropriate for Hospice are those persons who show signs of disease progression that might include, weight loss or decrease in appetite; they may have frequent infections or need more help with activities of daily living. Hospice care continues as long as the resident and family choose this type of care and the resident continues to qualify.
Hospice care is covered by Medicare, Medical Assistance, and other insurance payers. Care is provided regardless of ability to pay, disease, age, race, handicap, religion, or sexual orientation. It is provided wherever the patient calls home. The resident and family have a choice of Hospice provider.
Many residents receive Hospice services through the Medicare Hospice Benefit. The Medicare Hospice Benefit covers medicines, supplies and equipment related to the resident’s end of life disease. The Medicare Hospice Benefit uses a team approach to giving care. The Hospice care team members include all those who may be involved in providing the care such as: physicians, nurse practitioners, social workers, nurses, hospice aides, chaplains, grief counselors, dieticians, dietary, trained volunteers and therapists. There is a Hospice Registered Nurse available 24 hours a day, 7 days a week. The SNF or ICF/ MR staff are also included as members of the care team and important in the resident’s end of life care. Often times, SNF or ICF/MR staff are thought of as extended family.
It is the responsibility of the Hospice to oversee the comfort care of the resident just as if they were living at home. This includes reviewing, planning, teaching and evaluating the resident’s ongoing Hospice care. The Hospice care team, SNF or ICF/MR staff work together to provide quality resident care.
Comfort, Pain & Symptom Control in Hospice
The Hospice provider, SNF or ICF/MR staff work together to promote comfort and improve the quality of life for the resident.
At end of life, symptoms such as pain, shortness of breath, worry, restlessness and others may develop or worsen, and although curing the disease is no longer possible there is much that can be done for the resident and family to promote comfort.
Different groups of medicines such as morphine or oxycodone for pain and shortness of breath, lorazepam or haloperidol for restlessness, prochlorperazine maleate or scopolamine for an upset stomach and others may be used to relieve these symptoms.
Physical, mental, social and spiritual needs can change the resident’s comfort. The Hospice care team, SNF or ICF/MR work together to help make sure the resident is comfortable at end of life. Controlling pain and other symptoms helps to promote quality of life.
Studies show that most residents living in a SNF or ICF/MR do not want to be moved at end of life. Both families and residents express that they are more comfortable around the SNF or ICF/MR staff who are so often thought of as extended family. SNF and ICF/MR staff satisfaction also increases as they continue to be involved in the resident’s care.
Hospice is available to assist you and your facility whenever necessary to improve the comfort of patients in our care. You will find specific contact information in the resident’s medical record.
Respect for the rights of the patient and family is of critical importance during the sensitive months before the resident’s death. An individual who receives Hospice care has the right to:
Receive a copy of the Hospice Bill of Rights either before or at the time of admission to Hospice services.
Receive care according to the Hospice, SNF or ICF/MR plan(s) of care, and participate in creating and changing that plan.
Be told ahead of time what Hospice services are provided, how often and when hospice will visit, as well as the individual members of their hospice care team and who will furnish the specific care identified in the plan of care.
Be told of changes to the plan of care.
Refuse care, treatment or services.
Know the limits to services and grounds for termination of services.
Know ahead of time how payment for hospice services will be covered.
Receive an estimate of the amount the provider expects to receive from the payer.
Know there may be other Hospice programs available in the community.
Choose freely among providers and may change hospice providers. (For the resident to receive services from the chosen Hospice provider, the Hospice must have a contract with the facility in which the resident resides.)
Have personal, financial and medical information kept private and receive information on the Hospice’s privacy practices.
Be allowed to access records and written information.
Receive care by people properly trained and competent to perform their duties.
Be treated with kindness and respect, and have their personal belongings treated with respect.
Voice complaints and concerns regarding treatment or care.
Be free from physical and verbal abuse. Be free from mistreatment, neglect, or verbal, mental, sexual, and physical abuse, including injuries of unknown source, and misappropriation of patient property.
Receive reasonable advance notice of changes in services or charges.
Receive a coordinated transfer when changing service provider.
Know how to contact the individual responsible for handling problems and to have the provider investigate and attempt to resolve the concern or complaint.
Know the name and address of the state or county agency to contact for additional information or assistance.
Assert these rights without retaliation.
Have pain and symptoms managed to the patient’s desired level of comfort.
Communication & Documentation
Communication between the Hospice, SNF or ICF/MR staff is very important to providing quality care to both the resident and family. Communication begins as the resident is admitted to Hospice and continues as the resident’s condition changes.
Information Provided to SNF or ICF/MR by Hospice:
24 hour contact information
Care team members and what their responsibilities include
Copy of signed consents
Signed physician orders for Hospice admission
Medications covered by Hospice
Hospice and attending physician orders specific to the resident
Who is responsible for the coordination of care
Hospice visit information
Records of visits
Most recent plan of care
With this information, the Hospice provider is able to continue providing care and service as the resident’s condition changes. The Hospice care team is also available and willing to participate in the SNF or ICF/MR survey process that involves a resident who is enrolled in Hospice.
Death and Dying
The purpose of teaching about death and dying is to help people to understand what is normal and expected in order to lessen worry. No two people die the same. The following information serves as a guide as to what might occur in the resident’s dying process. Please call Hospice any time with questions or concerns.
What you might see 1 to 3 months before death:
• Less food intake
• Encourage food and fluid as the resident wishes— the resident will not be uncomfortable
without food or fluid
• More sleeping
• Allow rest and change the resident’s position if needed for comfort
• More quiet and lost in thought
• Less talkative
What you might see 1 to 2 weeks before death:
• More restlessness and/or agitation
• Use side rails according to facility policy and Plan of Care
• More confusion about time and place. Patient may not remember people familiar to them.
• Medicines may be helpful
• Provide gentle reminders to help reorient
• Visions of people and things not visible to others
• Visions are common in the dying process and may be of comfort to the dying person
• Medicines may be helpful if upsetting to the resident
• Incontinence of urine and stool, urine may decrease in amount and darken in color
• Provide resident with good personal hygiene, may use pads and briefs
• A urinary catheter may be inserted by the nurse for comfort
What you might see days or hours prior to death:
• Moist sounding breathing and/or difficulty clearing oral secretions
• Medicines may be helpful
• Elevating the head of the bed or turning the resident may help
• Provide good oral care
• Oral suctioning may help in rare cases
• Breathing pattern changes, the resident may have 20 second or longer pauses in
breathing called apnea.
• Changes in breathing are expected
• Medicines may be helpful
• Hearing is thought to be the last sense to diminish, so assume the resident can hear.
• Give explanations before care
• Encourage family to talk to the resident
• Sit with the resident as time allows
• Changes in skin color from pale to blue, red or purple and/or mottling which looks like
• Cover the resident loosely with blankets or sheets
• Avoid too many covers on the skin usually over bony areas
• Fevers are common in the final stages of life, often caused by pneumonia
• Cool cloths to the resident’s forehead
• Medicines such as acetaminophen may be helpful regulating temperature in areas of the
• Surges of energy, appearing to wake up and may even request to eat. Alert the family as this
period of wakefulness is —usually short in duration ---- and a time for them to visit and say
What is Grief?
Grief is the normal process of reacting to a loss. We experience personal loss and change throughout our lives. Residents experience grief and loss as changes occur throughout the dying process. SNF or ICF/MR staff may also experience grief and loss, as you may have cared for residents for a very long time.
There is no right or wrong way to grieve. Everyone responds to grief differently. Our response is unique and individual just as our losses are different. There are a wide range of normal responses to grief that include numbness, sadness, loneliness, emptiness, anger, guilt, regret or relief that the resident may no longer be suffering. Spiritually you may struggle to find meaning in the loss or may feel more spiritually connected.
Physical responses to grief may include difficulty sleeping and eating or we may sleep too much and eat too much, fatigue, exhaustion or restlessness, stomach aches, headaches and body pains. Initially we may withdraw from family, friends and social activities because grieving takes a lot of energy. Additional responses may include difficulty concentrating.
How Long Does Grief Last?
Grief lasts as long as it takes you to adjust and learn to live with your loss. Grief is no longer thought of as a series of stages, but rather more like a roller coaster – full of many ups and downs – highs and lows. Over time goes by and we work through our grief the feelings experienced by the loss will lessen. That doesn’t mean that we have forgotten or stopped loving the person who died. It means we can remember without as much pain.
Helping Myself and Others as They Grieve
Acknowledge and accept that you are grieving, be gentle with yourself and with others who are grieving. It is okay to laugh and have fun; balance home, play, work and rest. Grief needs expression; we should communicate our feelings and allow others to support us.
Create healthy memories by taking the time to talk and reminisce. This is all a part of healing. You might also say thank you and goodbye and attend memorial events within your facility.
If needed, seek professional help by accessing your employee assistance program, talking with a counselor or spiritual advisor or participate in a grief support group. You may also contact a Hospice bereavement coordinator.
Please download quiz, complete, print, and fax to Gentle Transitions Hospice (1-888-630-4428) or return to your Director of Nursing at your facility.