The fear of the unknown is always greater than the fear of the known.
One of the most frequent questions that is asked of our nurses is, “How long does he or she have to live?” One of the greatest sources of stress for caregivers is the onset of new or more severe symptoms as death approaches. The fear of the unknown is always greater than the fear of the known. In this respect, we offer you this information to help you to prepare for and anticipate symptoms which are indicative of approaching death. Your nurse and your physician are your best resources to help clarify your concerns about this information.
Not all of these symptoms will appear at the same time. Some may never appear. We want to relate each possible symptom to you in order to decrease your fear in case one appears suddenly. All the symptoms described are indicative of how the body prepares itself for the final stage of life… death. This is not the time to try to change the dying person, but the time to give full acceptance, support and comfort.
Signs and Symptoms of Impending Death
Your loved one may begin to sleep more and may be difficult to arouse. This is partially due to metabolic changes in the body. Sit down and hold your loved one’s hand, speaking softly and naturally. Don’t shake the patient or speak loudly. Do not try to give oral medications, food or fluids to an unconscious person.
The person may sometimes be confused about time, place or who is present in the room. Some of this may be due to changes in metabolism, changes in vision or increased sleeping. Have each visitor identify himself. Do not ask, “Do you know who I am?” Speak softly, clearly and truthfully when you need to communicate something important. Try to orient him/her to reality with familiar objects and pictures of loved ones, etc.
As the person’s vision begins to fail, he/she may only see what is nearby. Use indirect lighting and sit near the head of the bed where you can be seen more easily. Remember that although vision may decrease, the sense of hearing remains. Inform all visitors that the person may be able to hear voices, although he/she may no longer be capable of responding. Encourage everyone to continue talking to the person. Do not whisper.
Decreased Appetite/Refusing Food & Fluids
As death approaches, the person may want less and less food and fluids, eventually refusing them altogether. The body is conserving energy that would be used to digest the food for other functions. Don’t force foods or fluids. Ice chips of crushed up frozen juice are often refreshing in the mouth. Chapstick or lip balm helps soothe dry lips. If oxygen is being used, use a non-petroleum based product.
Decreased Urine Output
This occurs as fluid intake decreases and as circulation through the kidneys decreases. The person may lose bladder and/or bowel control as muscles in that area begin to relax. Pads may be needed to protect the bed and keep him/her clean, dry and comfortable. If your loved one has a bladder catheter in place, you will notice that the amount of urine will decrease as death comes closer.
Periods of Apnea (no breathing)
The person may stop breathing for 15-45 seconds. There may be periods of rapid respiration alternating with periods of apnea. This is called “Cheynes-Stokes” respiration. It is very common and indicates a decrease in circulation to the internal organs and build-up in the body waste products. Elevating the head of the bed 30-45 degrees may help bring comfort.
Rattling Breathing or Wet Gurgling
Secretions in the throat or the relaxing of the throat muscles can lead to noisy breathing, sometimes called the death rattle. Repositioning the person, limiting fluid intake, or using drugs to dry secretions can minimize the noise. Such treatment is aimed at the comfort of the family or caregivers because noisy breathing occurs at a time when the dying person is unaware of it. The death rattle does not cause discomfort for the dying person. This breathing can continue for hours and often means that death will occur in hours or days.
As the body shuts down, circulation diminishes to the arms and the legs and they may feel very cool to the touch. The pulse will become harder to feel. The skin color may change. The upper parts of the body may sweat as the peripheral circulation decreases. You may notice the underside of the body becoming much darker in color. Even though the skin is cold to the touch, most dying persons aren’t aware of feeling cold. Use light clothing and make sure there is fresh, circulating
air. Do not use an electric blanket. A change of position every two hours protects the skin and promotes comfort.
It is not unusual for a dying person to have an elevated temperature even as high as 104 degrees as they draw closer to death. Give analgesics such as Tylenol. These are available in pill, suppository and gel form. Use light clothing and cover; and apply cool moist cloths to the forehead or back of the neck.
The person may seem unresponsive or withdrawn. This may be the beginning of “letting go”. Just as you are losing someone you love, the dying person is in the process of losing everyone and everything he/she loves. It is only natural to be withdrawn. If the patient is allowed to express his/her sorrow, the stage of final acceptance will be easier. If the person is unresponsive, remember hearing remains all the way to the end. Speak to your loved one in your normal tone of voice, identifying yourself by name when speaking. Hold his/her hand and say whatever you need to say that will help the person to “let go”.
Out of Character Requests or Statements
This is a sign of preparation for death. Often a certain individual’s support is most needed. If you are not a part of this “inner circle” at the end, it doesn’t mean you are unloved or unimportant. It means you have already fulfilled your task with them and it is time for you to say goodbye. If you are part of the final “inner circle” of support, the person needs your affirmation and permission.
Performing Restless, Useless, Repetitive Tasks
This sometimes indicates something is still unresolved and unfinished and they can’t let go. The care team may be able to help you identify what is happening and help discover a way for your loved one to find release from tension or fear. A dying person will try to hold on, even though it brings prolonged discomfort, in order to make sure those who are left behind will be alright.
Your ability to release your loved one from this concern and give the assurance it’s alright to let go whenever he/she is ready, is one of the greatest gifts you can give.
What does hospice really do?
Hospice of Southwest Ohio provides specialized care services (patient care including symptom management, emotional support, spiritual support and psycho-social intervention), addressing issues most important to the patient’s needs and wants at the end of their life focusing on improving the individual’s quality of life.
How do I know when it is time for end-of-life care?
Patients are eligible for hospice care when they have been diagnosed with a terminal illness with a prognosis of 6 months or less. At that time, comfort, care, and symptom management become the primary focus, and curative treatment is no longer the patient’s choice or option.
When should hospice be called?
Where is hospice care provided?
Hospice care is provided in a setting that best meets the needs of each patient and family. The most common setting is the patient’s home. Hospice care is also provided in nursing homes, assisted living facilities and hospitals according to patient care needs. Hospice of Southwest Ohio also provides an inpatient facility at our Madeira headquarters.
Are all hospices the same?
No. “Hospice” is a medical specialty like pediatrics, geriatrics, oncology, etc. Each hospice provider is a different company. All hospices have the same general philosophy but their services often differ. In Ohio, it is your right to request the hospice of your choice if more than one hospice serves your area.
Can my pain and symptoms be controlled at home?
Yes. pain and other symptoms can usually be controlled in the patient’s home. If a symptom (i.e. pain, nausea or vomiting, or difficulty breathing) becomes a problem, the hospice nurse can be reached 24-hours a day, 7 days a week. Great advances in pain management and symptom control occurred during the past few years. Most symptoms can be controlled without the use of injections or IV medication. Hospice of Southwest Ohio nurses assess each patients’ pain and symptom control at each visit. Hospice medical directors are always available to adjust medications.
Does Hospice provide 24-hour in-home care?
No. Hospice provides intermittent nursing visits to assess, monitor and treat symptoms, as well as teach family and caregivers the skills they need to care for the patient. Team members are available 24 hours a day, 7 days a week to answer questions or visit anytime the need for support arises.
Can I live alone and still receive Hospice services?
Yes. Hospice of Southwest Ohio accepts patients who live alone, however, part of the admission and ongoing care process is to plan and prepare for the time in a patient’s illness when 24-hour a day care will be necessary.
Can a hospice patient choose to return to curative treatment?
Yes. Receiving hospice care is always a choice. A patient may leave hospice and return to curative treatment if that is their choice. If the patient later chooses to return to hospice care, Medicare, Medicaid, and most insurance companies permit re-activation of their hospice benefit.
Can I go back to the hospital and still receive hospice care?
Yes. However, many symptoms that would normally require hospitalization or an emergency room visit can be successfully managed at home by the hospice team, thus preventing the stress of hospitalization. Hospice patients generally only have the need for short hospital stays to stabilize a symptom and then are able to return home.
Is the decision for hospice care giving up hope or waiting to die?
No. Hospice is about living. Hospice of Southwest Ohio strives to bring quality of life and comfort to each patient and their family. Our successes are in helping a patient and family live fully until the end. Often patients will feel better with good pain and symptom management. Hospice is an experience of care and support that is different from any other type of care.
Does hospice do anything to bring death sooner?
No. Our goal is always to alleviate suffering and manage symptoms. Hospice does nothing to speed up or slow down the dying process. Our role is to lend support and allow the disease process to unfold as comfortably as possible.
Do I have to be homebound to receive hospice services?
No. Hospice is about living fully. We encourage patients to do what they enjoy as they are able. The hospice team assists patients and families in achieving their goals and dreams as much as possible.
Does hospice provide support to the family after the patient dies?
Yes. Bereavement Services follow family and caregivers for a year following the patient’s death. These services may include personal visits, providing information concerning the grief process and offering periodic opportunities for group support. Bereavement Services provides information and referral to other area resources when needed.
A chaplain at a New York hospital has designed a board that lets the critically ill communicate their spiritual pain and needs.
by Lucette Lagnado
When William Campion was in the intensive-care unit this month after a double lung transplant, he felt nervous and scared and could breathe only with the help of a machine.
Joel Nightingale Berning, a chaplain at Mr. Campion’s hospital, New York-Presbyterian/Columbia University Medical Center, stopped by. He saw that Mr. Campion had a tube in his neck and windpipe, which prevented him from speaking. The chaplain held up a communication board—not the kind used to check a patient’s physical pain and needs, but a “spiritual board” that asks if he or she would like a blessing, a prayer or another religious ministry. The board also lets patients rate their level of spiritual pain on a scale of 0 through 10, from none to “extreme.”
Mr. Campion, a 69-year-old Catholic, indicated his spiritual pain was acute: 8. Using the picture board, he signaled that he wanted to pray. The chaplain recited the Lord’s Prayer as Mr. Campion followed silently.
- A 90-year-old woman has opted out of cancer treatment to spend her remaining days on a once-in-a-lifetime road-trip with her family.
- The woman’s name is Norma and she is from Northern Michigan. Just two days after loosing her husband Leo, she found out she had uterine cancer.
- When her doctor explained that they could operate on the tumor and then put her through radiation and chemotherapy treatments, Norma politely declined.
- Instead of treatment, Norma decided to spend her last days on the road with her son, Tim, and his wife, Ramie in an RV.
- Ramie says she hopes the story will encourage other families to discuss end-of-life options.
Ramie and I had had fifteen opportunities to talk to my parents about their wishes. That is the number of times Ramie had joined me on my yearly pilgrimages to their rural Michigan home. The first year she came with me, Mom and Dad were in their mid-seventies—perhaps a little too young then to have this talk. Honestly it never dawned on us. They were still very self-sufficient and vibrant, after all. But as they aged into their eighties, I began to see a shift in my parents’ capabilities. They moved slower. Mom could not manage the stairs to the basement anymore, so Dad had to do the laundry. Cooking healthy meals became a hassle for Mom. Getting the mail from the box across the street became more of a chore for Dad. But they soldiered on. Read more.