Hospice & End of Life Information

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1. When should a decision about entering a hospice program be made and who should make it?

At any time during a life-limiting illness, it’s appropriate to discuss all of a patient’s care options, including hospice. By law the decision belongs to the patient. Understandably, most people are uncomfortable with the idea of stopping aggressive efforts to “beat” the disease. Hospice staff members are highly sensitive to these concerns and always available to discuss them with the patient and family.

2. Should I wait for our physician to raise the possibility of hospice, or should I raise it first?

The patient and family should feel free to discuss hospice care at any time with their physician, other health care professionals, clergy or friends.

3. What if our physician doesn’t know about hospice?

Most physicians know about hospice. If your physician wants more information about hospice, it is available from the National Council of Hospice Professionals Physician Section, medical societies, state hospice organizations, or the National Hospice Helpline, 1-800-658-8898. In addition, physicians and all others can also obtain information on hospice from the American Cancer Society, the American Association of Retired Persons, and the Social Security Administration.

4. Can a hospice patient who shows signs of recovery be returned to regular medical treatment?

Certainly. If the patient’s condition improves and the disease seems to be in remission, patients can be discharged from hospice and return to aggressive therapy or go on about their daily life. If the discharged patient should later need to return to hospice care, Medicare and most private insurance will allow additional coverage for this purpose.

5. What does the hospice admission process involve?

One of the first things the hospice program will do is contact the patient’s physician to make sure he or she agrees that hospice care is appropriate for this patient at this time. (Most hospices have medical staff available to help patients who have no physician.) The patient will be asked to sign consent and insurance forms. These are similar to the forms patients sign when they enter a hospital.
The so-called “hospice election form” says that the patient understands that the care is palliative (that is, aimed at pain relief and symptom control) rather than curative. It also outlines the services available. The form Medicare patients sign also tells how electing the Medicare hospice benefit affects other Medicare coverage.

6. Is there any special equipment or changes I have to make in my home before hospice care begins?

Your hospice provider will assess your needs, recommend any equipment, and help make arrangements to obtain any necessary equipment. Often the need for equipment is minimal at first and increases as the disease progresses. In general, hospice will assist in any way it can to make home care as convenient, clean and safe as possible.

7. How many family members or friends does it take to care for a patient at home?

There’s no set number. One of the first things a hospice team will do is to prepare an individualized care plan that will, among other things, address the amount of caregiving needed by the patient. Hospice staff visit regularly and are always accessible to answer medical questions, provide support, and teach caregivers.

8. Must someone be with the patient at all times?

In the early weeks of care, it’s usually not necessary for someone to be with the patient all the time. Later, however, since one of the most common fears of patients is the fear of dying alone, hospice generally recommends someone be there continuously. While family and friends do deliver most of the care, hospices provide volunteers to assist with errands and to provide a break and time away for primary caregivers.

9. How difficult is caring for a dying loved one at home?

It’s never easy and sometimes can be quite hard. At the end of a long, progressive illness, nights especially can be very long, lonely and scary. So, hospices have staff available around the clock to consult by phone with the family and make night visits if appropriate. To repeat: Hospice can also provide trained volunteers to provide “respite care,” to give family members a break and/or provide companionship to the patient.

10. What specific assistance does hospice provide home-based patients?

Hospice patients are cared for by a team of physicians, nurses, social workers, counselors, hospice certified nursing assistants, clergy, therapists, and volunteers - and each provides assistance based on his or her own area of expertise. In addition, hospices provide medications, supplies, equipment, and hospital services, related to the terminal illness. and additional helpers in the home, if and when needed.

11. Does hospice do anything to make death come sooner?

Hospice neither hastens nor postpones dying. Just as doctors and midwives lend support and expertise during the time of child birth, hospice provides its presence and specialized knowledge during the dying process.

12. Is caring for the patient at home the only place hospice care can be delivered?

No. Although 90% of hospice patient time is spent in a personal residence, some patients live in nursing homes or hospice centers.

13. How does hospice “manage pain”?

Hospice believes that emotional and spiritual pain are just as real and in need of attention as physical pain, so it can address each. Hospice nurses and doctors are up to date on the latest medications and devices for pain and symptom relief. In addition, physical and occupational therapists can assist patients to be as mobile and self sufficient as they wish, and they are often joined by specialists schooled in music therapy, art therapy, massage and diet counseling. Finally, various counselors, including clergy, are available to assist family members as well as patients.

14. What is hospice’s success rate in battling pain?

Very high. Using some combination of medications, counseling and therapies, most patients can attain a level of comfort that is acceptable to them.

15. Will medications prevent the patient from being able to talk or know what’s happening?

Usually not. It is the goal of hospice to have the patient as pain free and alert as possible. By constantly consulting with the patient, hospices have been very successful in reaching this goal.

16. Is hospice affiliated with any religious organization?

No. While some churches and religious groups have started hospices (sometimes in connection with their hospitals), these hospices serve a broad community and do not require patients to adhere to any particular set of beliefs.

17. Is hospice care covered by insurance?

Hospice coverage is widely available. It is provided by Medicare nationwide, by Medicaid in 39 states, and by most private insurance providers. To be sure of coverage, families should, of course, check with their employer or health insurance provider.

18. If the patient is eligible for Medicare, will there be any additional expense to be paid?

Medicare covers all services and supplies for the hospice patient related to the terminal illness. In some hospices, the patient may be required to pay a 5% or $5 “co-payment” on medication and a 5% co-payment for respite care. You should find out about any co-payment when selecting a hospice.

19. If the patient is not covered by Medicare or any other health insurance, will hospice still provide care?

The first thing hospice will do is assist families in finding out whether the patient is eligible for any coverage they may not be aware of. Barring this, most hospices will provide for anyone who cannot pay using money raised from the community or from memorial or foundation gifts.

20. Does hospice provide any help to the family after the patient dies?

Hospice provides continuing contact and support for caregivers for at least a year following the death of a loved one. Most hospices also sponsor bereavement groups and support for anyone in the community who has experienced a death of a family member, a friend, or similar losses.

 
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Normal Emotional, Spiritual, and Mental Signs and Symptoms with Appropriate Responses

Withdrawal
The person may seem unresponsive, withdrawn, or in a comatose-like state. This indicates preparation for release, a detaching from surroundings and relationships, and a beginning of letting go. Since hearing remains all the way to the end, speak to your loved one in your normal tone of voice, identifying yourself by name when you speak, hold his or her hand, and say whatever you need to say that will help the person let go.

Vision-like Experiences
The person may speak or claim to have spoken to persons who have already died, or to see or have seen places not presently accessible or visible to you. This does not indicate an hallucination or a drug reaction. The person is beginning to detach from this life and is being prepared for the transition so it will not be frightening. Do not contradict, explain away, belittle or argue about what the person claims to have seen or heard. Just because you cannot see or hear it does not mean it is not real to your loved one. Affirm his or her experience. They are normal and common. If they frighten your loved one, explain that they are normal occurrences.

Restlessness
The person may perform repetitive and restless tasks. This may in part indicate that something still unresolved or unfinished is disturbing him or her, and prevents him or her from letting go. Your Hospice team members will assist you in identifying what may be happening, and help you find ways to help the person find release from the tension or fear. Other things which may be helpful in calming the person are to recall a favorite place the person enjoyed, a favorite experience, read something comforting, play music, and give assurance that it is OK to let go.

Fluid and Food Decrease
When the person may want little or no fluid or food, this may indicate readiness for the final shut down. Do not try to force food or fluid. You may help your loved one by giving permission to let go whenever he or she is ready. At the same time affirm the person s ongoing value to you and the good you will carry forward into your life that you received from him or her.

Decreased Socialization
The person may only want to be with a very few or even just one person. This is a sign of preparation for release and affirms from whom the support is most needed in order to make the appropriate transition. If you are not part of this inner circle at the end, it does not mean you are not loved or are unimportant. It means you have already fulfilled your task with your loved one, and it is the time for you to say Good-bye. If you are part of the final inner circle of support, the person needs your affirmation, support, and permission.

Unusual Communication
The person may make a seemingly out of character or non sequitur statement, gesture, or request. This indicates that he or she is ready to say Good-bye and is testing you to see if you are ready to let him or her go. Accept the moment as a beautiful gift when it is offered. Kiss, hug, hold, cry, and say whatever you most need to say.

Giving Permission
Giving permission to your loved one to let go, without making him or her guilty for leaving or trying to keep him or her with you to meet your own needs, can be difficult. A dying person will normally try to hold on, even though it brings prolonged discomfort, in order to be sure those who are going to be left behind will be all right. Therefore, your ability to release the dying person from this concern and give him or her assurance that it is all right to let go whenever he or she is ready is one of the greatest gifts you have to give your loved one at this time.

Saying Good-bye
When the person is ready to die and you are able to let go, then is the time to say good-bye. Saying good-bye is your final gift of love to your loved one, for it achieves closure and makes the final release possible. It may be helpful to lay in bed and hold the person, or to take his or her hand and then say everything you need to say.

It may be as simple as saying, I love you. It may include recounting favorite memories, places, and activities you shared. It may include saying, I ’m sorry for whatever I contributed to any tension or difficulties in our relationship. It may also include saying, Thank you for...

Tears are a normal and natural part of saying good-bye. Tears do not need to be hidden from your loved one or apologized for. Tears express your love and help you to let go.

How Will You Know When Death Has Occurred?
Although you may be prepared for the death process, you may not be prepared for the actual death moment. It may be helpful for you and your family to think about and discuss what you would do if you were the one present at the death moment. The death of a hospice patient is not an emergency. Nothing must be done immediately.

The signs of death include such things as no breathing, no heartbeat, release of bowel and bladder, no response, eyelids slightly open, pupils enlarged, eyes fixed on a certain spot, no blinking, jaw relaxed and mouth slightly open. A hospice nurse will come to assist you if needed or desired. If not, phone support is available.

The body does not have to be moved until you are ready. If the family wants to assist in preparing the body by bathing or dressing, that may be done. Call the funeral home when you are ready to have the body moved, and identify the person as a Hospice patient. The police do not need to be called. The Hospice nurse will notify the physician.

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Each person approaches death in their own way, bringing to this last experience their own uniqueness.  What is listed here is simply a guideline, a road map.  Like any map there are many roads arriving at the same destination, many ways to enter the same city. 

 

Use this guideline while remembering there is nothing concrete here; all is very, very flexible.  Any one of the signs in this booklet may be present; all may be present; none may be present.  For some, it will take months to separate from their physical body, for others only minutes.

 

Death comes in its own time; in its own way.

 

Death is as unique as the individual who is experiencing it.

 

If the following signs were to be put on a time table, a very flexible time table, we could say these changes begin one to three months before death occurs.  The actual dying process often begins within the two weeks prior to death.  There is a shift that occurs within a person which takes them from a mental processing of death to a true comprehension and belief in their own mortality.  Unfortunately, this understanding is not always shared with others.

 

One to three months prior 

As the knowledge that “yes, I am dying” becomes a reality, a person begins to withdraw from the world around them.  This is the beginning of separation, first from the world - no more interest in newspapers or television, then from people - no more neighbors visiting.  “Tell aunt Jessie I don’t feel like company today”, and finally from the children, grandchildren and perhaps even those persons most loved.

 

This is becoming a time of withdrawing from everything outside of one’s self and going inside.  Inside where there is a sorting out, evaluating one’s self and one’s life.  But inside there is only room for one.

 

This processing of one’s life is usually done with the eyes closed, so sleep increases.  A morning nap is added to the usual afternoon nap.  Staying in bed all day and spending more time asleep than awake becomes the norm.  This appears to be just sleep but know that important work is going on inside on a level of which “outsiders” are not aware.

 

With this withdrawal comes less of a need to communicate with others.  Words are seen as being connected with the physical life that is being left behind.  Words lose their importance; touch and wordlessness take on more meaning.

 

Food 

Food is the way we energize our body.  It is the means by which we keep our body going, moving, alive.  We eat to live.  When a body is preparing to die, it is perfectly natural that eating should stop.  This is one of the hardest concepts for a family to accept. 

 

There is a gradual decrease in eating habits.  Nothing tastes good.  Cravings come and go.  Liquids are preferred to solids.  “I just don’t feel like eating.”  Meats are the first to go, followed by vegetables and other hard to digest foods until even soft foods are no longer eaten.

 

It is okay not to eat.  A different kind of energy is needed now.  A spiritual energy, not a physical one, will sustain from here on.

 

One to two weeks prior

Sleeping is most of the time now.  A person can’t seem to keep their eyes open.  They can, however, be awakened from that sleep.  There is literally one foot in each world.  A person often becomes confused, talking to people, and about places and events, that are unknown to others.  They may see and converse with loved ones who have died before them.  They may be picking at the bedclothes and agitated arm movements.  There is a seeming aimlessness to all physical activity.  Focus is changing from this world to the next; they are losing their grounding to earth.

  

Physical Changes 

There are beginning changes which show the physical body is losing its ability to maintain itself.

 

The blood pressure often lowers.

 

There are changes in the pulse beat either increasing from a normal of eighty to upwards of one hundred fifty, or decreasing anywhere down to zero.

 

The body temperature fluctuates between fever and cold. 

 

There is increased perspiration, often with clamminess.

 

 

The skin color changes; flushed with the fever, bluish with a cold.  A pale yellowish pallor (not to be confused with jaundice) often accompanies approaching death.  The nail beds, hands and feet are often pale and bluish because the heart can’t circulate the blood through the body at a normal flow.

 

Breathing changes also occur.  Respiration may increase from a normal sixteen to twenty to upwards of forty or fifty breaths every minute, or decrease to nine or even six breaths a minute.  There can be a puffing, a blowing of the lips on exhaling, or actual stopping of the rhythmic breathing only to resume again.  This generally occurs during sleep.  Congestion can also occur, a rattling sound in the lungs and upper throat.  There might be coughing with this but generally nothing can be brought up.  All of these breathing changes and congestion have a tendency to come and go.  One minute any or all of these symptoms may be present, the next minute breathing may clear and be even.

 

One to two days to two hours 

Sometimes there is a surge of energy.  A person may talk clearly and alertly when before there had been disorientation.  A favorite meal might be asked for and eaten when nothing had been eaten for days.  A person might sit in the living room with relatives and visit when they hadn’t wanted to be with anyone for quite awhile.  The spiritual energy for transition from this world to the next has arrived and it is used for a time of physical expression before moving on.  This surge of energy is not always as noticeable as the above examples but in hindsight it can usually be recognized.

 

The one to two weeks signs that were present earlier become more intense as death approaches.

 

Restlessness can further increase due to lack of oxygen in the blood.

 

The breathing patterns become slower and more irregular.  Breathing often stops for ten to fifteen or even thirty to forty-five seconds before resuming again.

 

Congestion can be very loud.  It can be affected by positioning on one side or the other.  It still comes and goes.

 

The eyes may be open or semi-open but not seeing.  There is a glassy look to them, often teareing.

 

The hands and feet now become purpleish.  The knees, ankles and elbows are blotchy.  The underside of the arms, legs, back and buttocks also can be blotchy.

 

Generally a person becomes non-responsive (unable to respond to their environment) sometime prior to death.

 

How we approach death is going to depend upon our fear of life, how much we participated in that life, and how willing we are to let go of this known expression to venture into a new one.  Fear and unfinished business are two big factors in determining how much resistance we put inot meeting death.

 

The separation becomes complete when breathing stops.  What appears to be the last breath is often followed by one or two long spaced breaths and then the physical body is empty.  The owner is no longer in need of a heavey, non functioning vehicle.

 

They have entered into a new city, a new life.

 

 

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