1. What is hospice?
Hospice is care for people who are terminally ill that focuses on pain relief and symptom management.
Instead of trying to cure the disease, hospice provides comfort to the patient and the family. It provides support for emotional and spiritual end-of-life issues, in order to give seriously ill patients and their loved ones meaningful time together.
2. What does it mean when it’s time to call hospice?
Calling hospice means the patient and family no longer want to pursue curative care.
Generally, this happens when a physician determines that a patient’s life expectancy is six months or less, that most medical treatments and interventions are no longer effective, and will not cure the disease and/or will prolong suffering.
Calling hospice shifts a patient’s care away from disease specialists and surgeons. An interdisciplinary team trained in comfort care, pain relief, psychosocial support and quality of life takes over with the goal of improving the quality of life for the time remaining.
3. What’s the first step to getting started with hospice care?
Anyone can request a hospice evaluation at no cost. Sometimes the physician makes the referral, or provides several options and lets the patient/family decide.
The physician must certify to the hospice provider that the patient is eligible and has a prognosis of 6 months or less.
When a referral is made, the hospice provider makes an appointment (the same day or on a date convenient for the family) to meet with the patient and family. The admissions nurse evaluates the patient, answers the family’s questions and creates a plan of care that reflects the patient/family’s wishes.
When the patient/family is ready to decide, they sign admissions paperwork and the hospice team begins to visit.
4. Who is on the hospice team? Who is responsible for care?
Hospice patients receive services from an “interdisciplinary” team, meaning members come from different disciplines or fields.
The team usually includes a physician, registered nurse, hospice aide, social worker, chaplain, bereavement services manager, a volunteer and other healthcare professionals.
5. Where do patients receive hospice services?
Hospice care is typically provided wherever the patient calls home.
Home could be a private residence, assisted living community or nursing home. Patients can also receive hospice services while in the hospital, or in an inpatient hospice unit.
6. What are hospice “levels of care?”
Levels of care are specific types of hospice care to address different needs of patients and families.
Medicare requires all hospice providers to offer four distinct levels of care. They are:
- Routine hospice care in the home
- Shifts of acute symptom management to the patient’s bedside for up to 24 hours/day per Medicare guidelines. ProCare Hospice calls this Continuous Comfort Care, it can also be called “continuous care.”
- Round-the-clock inpatient care when symptoms cannot be managed at home
- Respite inpatient care for the patient when the family caregiver is away 1−5 days
7. If hospice is for dying, does choosing a hospice mean giving up on my loved one?
No. When treatment options for a disease have been exhausted or no longer work, hospice provides a way for people to live in comfort, peace and dignity without attempting treatments that are no longer effective or outweigh the benefits to the patient.
Hospice isn’t about giving up, but about improving the quality of the patient’s life by being free of pain, surrounded by family and in the comfort of home.
8. When is it time for hospice?
Hospice services can begin when a doctor determines the patient’s life expectancy is six months or less.
Patients should consider hospice services when medical treatments can no longer cure their disease and/or the burden of side-effects and symptoms outweigh the benefits of treatment.
9. What is the difference between diagnosis and prognosis?
A diagnosis identifies the cause of the illness (for example, the common cold, pneumonia, lung cancer, etc.). A prognosis is a prediction about how the illness will develop.
In the case of people who are terminally ill, the prognosis is often the physician’s estimate of how long the illness will take to run its course before the patient dies.
10. Are there signs that a patient might be ready for hospice services?
When the burden of treatment outweighs the benefits and/or the patient has had multiple hospitalizations over the last several months, he or she might be ready for hospice.
Other indications include:
- Repeat trips to the emergency department
- Unrelieved pain
- Frequent infections
- Sudden or progressive decline in physical functioning and eating
- Weight loss/difficulty swallowing
- Shortness of breath/oxygen dependence
11. What are the qualifications for hospice care?
A patient is eligible to receive hospice services when their illness is terminal, meaning a physician has determined their life expectancy is six months or less if the disease continues as expected.
There are medical guidelines that accord with the patient’s disease and help a physician make a hospice referral. You can read more here.
12. How often does the hospice nurse or doctor visit?
The hospice nurse creates a plan of care with the patient’s and family’s input, designed to meet the patient’s needs.
This determines the frequency of visits by the doctor, nurse and others on the hospice team.
13. Who will talk to me about my loved one once we have hospice? Who will keep us informed?
You will always be kept up-to-date on your loved one’s condition.
The primary hospice nurse can answer any questions you have, tell you about your loved one’s care and progress, and prepare you for what to expect.
14. Why would I put my child in hospice? Isn’t hospice for the very old?
Hospice is for anyone with a terminal disease.
From infants to adult through old age, hospice works to improve the quality of life as a terminal disease progresses, as well as support for those who are caring for the patient.
15. Will hospice care for my dad 24/7? Will I still need to take care of him?
Yes, you will always be his primary caregiver.
Hospice can supplement that care to help share the responsibility of caregiving with regular visits and education from the hospice care team.
16. What is palliative, or comfort care?
Care near the end of life focuses on comfort rather than cure.
When attempts to reverse the course of their terminal illness are determined to be futile or treatment side effects outweigh any benefit, a terminally-ill patient may choose palliative care, also known as comfort care.
This type of care accepts that the patient is declining and focuses on pain and symptom management throughout the progression of the disease.
17. What is an advance directive?
An advance directive is a legal document that ensures your wishes will be followed when you receive care in the future but are no longer be capable of making or communicating those decisions.
It is critical near the end of life, when many people are not able to speak for themselves. Completing an advance directive requires that you consider your options and make decisions now, while you are healthy. Writing down what you do and do not want if you become seriously ill and unlikely to get better will make sure you receive the dignity, comfort and peace of mind you deserve at the end of life.
Advance directives include different forms and vary by state. They may be called POLST, Power of Attorney for Healthcare, Living Will, Five Wishes, Medical Power of Attorney, Healthcare Proxy, My Directives, Advance Care Planning, etc.
Click here for information on Nevada’s POLST.
18. What happens after my loved one dies?
A member of your hospice team will answer questions and help make arrangements. Ideally, a member of your hospice team will be at the bedside at the time of death. They are able to explain the stages of death, make necessary phone calls, prepare the body and support the family in the first few hours after death.
He or she will arrange for the body to be removed or, if the family would like to wait, perhaps until a family member arrives, that can be arranged as well.
If a member of the team is not present at the death, he or she will arrive as soon as you call the hospice provider.
19. What about grief and other emotions? Does hospice address those?
ProCare Hospice employs full-time bereavement specialists to address all aspects of grief.
Types of grief include anticipatory grief, as well as the grief process after death. Hospices are required to provide bereavement services for the family for up to 13 months after the death.