For most people, hospice, or end-of-life care, takes place at home, and the person can die at home with hospice care. But other hospice patients will receive their care in facilities. These facilities could be the hospital, assisted living, memory care, or a nursing home.
Jump ahead to these sections:
- Why Would Someone Be On Hospice Care in a Facility?
- How Does Hospice Know When Death Is Near?
- What Happens in the Final Hours Before a Death at a Hospice Facility?
- What Happens After a Loved One Dies in a Hospice Facility
- Does Hospice Help the Deceased’s Family After the Death?
People choose hospice to get support, comfort, and pain relief at the end of life. You may have concerns and worries about what happens at the end of life and what the procedure is before and after someone dies.
Dying is a process that is unique to every individual but also has some similarities. Not everyone will follow the same pattern, and much of that depends on their diagnosis and how early or late hospice was started. Hospice professionals are experts in death and dying and can help you understand the death procedure and what to expect.
Why Would Someone Be On Hospice Care in a Facility?
Most people would prefer to be at home on hospice since that is where they are most comfortable. But hospice does not provide round-the-clock care depending on the patient’s condition. Families often can’t give the additional care someone requires. Other changing circumstances and levels of hospice care may also dictate a move from home before or after someone goes on hospice.
Under hospice, a patient may be admitted to the hospital under specific criteria to manage pain symptoms or assist with other symptoms that can’t be controlled at home. Although the intention is to return the patient home, that doesn’t always happen, and someone could die in the hospital. In other cases, someone could have a sudden worsening of a medical condition and choose to go on hospice at the hospital since they are very close to the end of life and going home is not practical or safe.
Inpatient community hospice
Free-standing residential hospice facilities are a choice patients and their families make when dying at home is too challenging. A community hospice setting will provide round-the-clock care, but room and board costs are the patient’s responsibility. The entire facility is dedicated to hospice care.
There are several convenient aspects of assisted living. Most assisted living communities can offer round-the-clock checks, bathing, and other assistance but will not provide skilled nursing care. Hospice and assisted living staff work together to meet the patient’s needs, but families may need to step in. Assisted living provides meals, housekeeping, and bathing, which can alleviate pressure on families.
If your loved one is in a nursing home, it is probably because their condition is so deteriorated and serious that they require 24-hour care. With a terminal illness, patients can request an outside hospice to come to the nursing home to provide services and work with nursing home staff to offer comfort care and pain management.
How Does Hospice Know When Death Is Near?
Hospice nurses have usually spent years with all kinds of patients and have observed death many times over. In general, hospice staff knows when death is near, and research into dying has given us a closer look at what happens to the body and the spirit when death is near. Everyone is unique, so your loved one may experience some or all of these changes. It can be frightening not knowing what to expect when someone dies.
Decreased need for food and drink
A decrease in the desire for food and drink is normal when someone is near death. Sometimes this is due to difficulty swallowing, and the digestive system slows down along with other bodily functions. However, if the patient desires food and drink at the end of life, they can have it as long as choking is monitored. When someone stops eating and drinking, the family can keep their loved one’s lips moistened.
Activity level decreases
Physical and mental activity decreases. The patient may sleep more and resist being moved or repositioned. Even if your loved one appears not to be aware of what is happening around them, they can probably hear what you or anyone else is saying.
Less responsive to surroundings
When death is near, your loved one may not show any interest in people or any kind of stimulation. Even when awake, they may be withdrawn and less receptive to talking or engaging with anyone.
When someone is dying, the autonomic system changes. Blood pressure, heart rate, and breathing become slower. Body temperature can decrease, and the person’s hands and feet are cold to the touch. There could also be periods of rapid breathing or no breathing for brief periods of time.
Breathing may also sound raspy, and the patient could cough. The sound can disturb family members, and there are ways for hospice staff to decrease saliva to reduce these episodes. These breathing patterns are often referred to as a “death rattle” and indicate that the swallowing mechanism has shut down.
Increase in pain
An increase in pain is expected when someone is dying. Some people can verbalize the increase in pain from stiff joints, worsening arthritis symptoms, or discomfort from pressure ulcers. If the person is unconscious, they may grimace or clench their fists or groan and moan. Hospice staff can give medications prescribed by the medical director to alleviate pain.
Agitation and restlessness are common when someone is near death. Some medications can help with this condition. If the person is conscious, they may be irritable, restless, or even hostile.
Sensory changes are another sign that death may be near. There could be symptoms such as hallucinations (seeing things and people that aren’t there). Others may have delusions (thinking that people are trying to hurt them or believing they are capable of doing something they can’t). Some people even have spiritual experiences.
Terminal lucidity is a term used to describe a sudden and unexpected increase in energy and awareness. The patient may start to converse, be clear, and want food and drink. Terminal lucidity can happen days, hours, or minutes before death. It appears as though the person on hospice is recovering, but they will usually decline again fairly rapidly.
Decrease in consciousness
Often before death, a person may lapse into what seems like a coma. This is a deep state of unconsciousness where the patient can’t be aroused and is unresponsive to touch or conversation.
What Happens in the Final Hours Before a Death at a Hospice Facility?
Once hospice recognizes that a person is close to death at a facility, they will contact family immediately. Alerting the family to impending death allows those close enough to do so a chance to say their goodbyes. Hospice staff ensures that the patient is comfortable and administers pain medications if needed. Families can become anxious about dying symptoms, and hospice staff can reassure family members that what they observe is a normal part of the dying process.
What Happens After a Loved One Dies in a Hospice Facility
There is a process that happens after someone dies in a hospice facility. When someone is receiving hospice somewhere other than home, more staff is likely available at the time of death to set things in motion.
If you are with your loved one when they die, you will most likely know that death has occurred. However, someone in the medical field must certify the legal pronouncement of death. Depending on what kind of facility it is, it could be a hospice nurse or a physician. If neither of them is available, someone will need to be contacted to do this. The time of death is recorded for death certificate purposes.
Catheters and tubes are removed. If the family requests it, the body can be washed by facility or hospice staff, and clean clothes put on the body. The time allowed to spend with the body is up to the facility, but it can be several hours.
Someone contacts the mortuary. Facility staff generally has this information in advance, and they may call or you can when you are ready. If the deceased has arranged for organ donation, the appropriate company is called to harvest those.
The mortuary arrives and takes the body. There may be questions about pre-planning arrangements to see if anything has changed. The mortuary will supply the family with as many death certificates as requested. Death certificates are needed to close out accounts on behalf of the deceased.
Staff at the facility will assist the family with removing personal belongings. Generally, the facility will allow ample time for the family to collect or dispose of belongings and furniture.
Does Hospice Help the Deceased’s Family After the Death?
Hospice does not end when a person dies. Medicare requires up to a year of bereavement services if requested by the family. Some of the services hospice offers:
- If the family hasn’t selected a mortuary, the hospice staff will assist the family in choosing one. Mortuaries are accustomed to being called at the time of death without any pre-planning arrangements.
- Chaplain services help the family with spiritual resources and guidance.
- Social work connects families to additional programs and grief counseling.
- All hospice staff that have worked with the patient will reach out to the family with condolences and offers of help. If a spouse or partner remains, hospice staff pays special attention to that person’s needs. They may need time and support while they grieve.
- The hospice nurse arranges for all durable medical equipment to be picked up.
Hospice Death Procedure in a Facility
Even if your loved one is in a facility and not at home at the end of life, hospice extends the same compassionate comfort care wherever the patient is. If you have questions about your loved one’s care in a facility, don’t be afraid to ask. Take the time you want to spend these precious hours and days with your loved one in a facility.