Important Issues and Concerns Regarding
Anticipatory Grief
How To Help Children Cope With Death & Dying
Hydration & Nutrition
Spiritual Concerns
Refers to a set of emotions we feel when someone we love is very ill and we anticipate their possible death. As patients and families confront life threatening illness, they are vulnerable to many different anticipated if not actual losses. These include loss of functional capabilities, control, independence, body progresses, the risk of losing control over fundamentally important aspect of their lives increases at times dramatically.
Grief reactions, the emotional reactions to loss, frequently run very high as everyone confronts the possibility of the end of the patient's life and the change death will bring.
If your loved one is dying, these are some ways you can be helpful:
- Try to identify, anticipate and meet the needs of your loved one.
- Assist them with their own problem solving of specific fears and concerns and with their own anticipatory mourning.
- Allow them to verbalize their concerns keep communication open.
- Participate in their life review.
- Work with them to determine how he/she would like to be remembered.
- If they ask, help with preplanning the type of funeral or memorial service they prefer.
- Share your feelings, fears and questions with people you trust.
- Keep a journal in which you record your responses to the illness and impending loss.
- You are losing someone you love. Review you life and relationship with them and discuss moments you shared, treasured and maybe times you regretted. Take out the photo albums! Reminisce.
- Cry if you need to. Don't be ashamed of showing your feelings.
- Plan some activities away from care giving to help you find the strength to continue being a good caregiver.
Helping Children Cope with Death & Dying
Example:
A preschool does not understand that death is permanent and not irreversible. He/she therefore may expect that the person that died may one day return. The world to them is concrete and factual. If they are told that their mom or day went to “heaven”; they may want to visit them there.
Children and Grief
- It is good to use simple, straightforward terms that especially stress what happened to the body. It is important for adults to share their religious or spiritual beliefs with their children. They also need to say that the body has stopped working. In other words, the body can no longer can see, hear, breathe, eat or sleep. This is very important since the child may worry about what happens when the body is buried.
- Avoid distortions of reality like, “Dad has gone on a long trip” or “Mom went to sleep”. A child may then be afraid to go to sleep.
- If a parent is dying, it is important to let the child know who will be caring for him/her after the parent dies. Even though the surviving parent will be caring for them, they may be afraid that the surviving parent will die too.
- Like adults, children need to feel part of a support group that loves them in order to cope with their feelings. If they would like to attend the funeral or visitation, they should be allowed to do so. This will help them establish some closure.
- It is not necessary to protect a child from adult's expression of grief. Though we would like to protect our children from loss, it is not possible to do so because loss is a part of life.
- When children see that adults are sad and cry it helps them to learn appropriate responses to death and loss.
- Talk to the child about death the let them ask questions. Answer candidly and accurately.
- Let the child express his/her beliefs.
- Explain in advance what will occur at the funeral. If they wish, allow them to leave a small gift or photo in the coffin.
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The Hospice Philosophy on Nutrition and Hydration
Eating is man's primeval urge. We begin to eat at birth and eating is survival. It results in pleasure, health, energy and growth. To “mother” meant to feed and nurture. To try and educate entire populations, that anything to the contrary might be true would seem like an almost impossible task. Since we are taught from birth that food is life and eating is living we are faced with awesome task of trying to teach caregivers, family and friends that Death does not require nutrition.At hospice we hold the philosophy that we will not force feed patients who are terminally ill. We encourage them to eat whatever they want and can tolerate. We help to educate caregivers on the use of supplements and give suggestions on continuing to offer a patients' special foods in small portions. Foods that offer the patient comfort and pleasure.
Dehydration
A Natural Analgesic When Death Is Imminent
Benefits of dehydration, first remember that hospice believes the benefits should always outweigh the burdens. Up until the middle of the 20th Century dehydration was a normal end-of-life process and acted as a natural anesthetic for our ancestors. In the middle of the 20th Century, healthcare became high tech and dehydration was thought to cause discomfort. Before hospices, almost everyone in the hospital setting who was dying received hydration for comfort.Many healthcare professionals questioned the need for hydration at the end-of-life but only until Hospices where established where the benefits of dehydration at the end-of-life accepted as natural part of the dying process. Have you ever considered that hydration may actually cause suffering in patients with terminal r irreversible end-stage multi-organ failure?
Dehydration does not cause death, but effectively reduces pain and allows the disease process to take its natural course. Test have shown that there are natural endorphins (anesthetics) which are produced and help relieve pain and therefore can help reduce the amount of pain medication needed at the end-of-life. In patients with heart failure, liver and kidney failure giving fluids can cause overload and patients can drown in their own secretions.
The Practical Benefits of Dehydration
The less body fluids at the end-of-life can relieve the patient of a number of burdens. Patients will have:
- Reduced urine output therefore less need for a catheter or commode. Less urine incontinence = less chance of rash or skin breakdown.
- Reduced fluid in the gastrointestinal tract will help reduce nausea and vomiting.
- Less edema and ascites. Remember in patients with end stage renal, liver and heart failure, fluids move out of the blood vessels into the tissues and third spaces. Therefore hydrating can cause increased edema, ascites, pressure around tumors and fluid accumulation in the stomach and other organs.
- Less pulmonary and pharyngeal secretions = less congestion and will help with breathing.
Frequently Asked Question:
To Hydrate or Not to Hydrate
No intervention should be without a purpose and none should cause more harm than good.
“Food & Water” A Hospice Perspective
Written by
Judy Sandler, RN, MSN, CS
“All they do is talk about food, always wanting me to eat more. Can't you make them understand that I'd eat if I could?”
Hospice team members hear these questions from almost every patient and family with which they work. Every terminally ill patient experiences loss of appetite and weight loss and almost every family member sees food not only as necessary for survival but also as a source of nurturing, caring and comfort. While family members become focused on insisting the patient eat even when he says “no”, the patient is rarely concerned about loss of appetite. This conflict can be emotionally painful to both patient and family, leading to conflict and stress as the disease progresses.
In the Hospice care program, nutrition is an issue that must be dealt with at every home visit and, as with other aspects of care, nutrition involves physical, psychological and spiritual issues. The goal of Hospice care is to educate the patient and family to prepare them for changes that will occur as the disease progresses, to explain why these changes occur, what options for care are available, what the outcome of intervention is likely to be, and then to support the decisions they make.
Patients and families need to understand the effects of food and water throughout the early stages to the final stages of terminal illness. In the early stage, it is appropriate to encourage the patient to eat and drink, to offer favorite foods in small quantities and frequently throughout the day. It is helpful for families to know how much it is realistic to expect the patient to eat or drink. A small glass of juice and a few bites of food might be considered a meal.
Dietary counseling can be appropriate but must be done with caution. Anxious family members will try anything and everything that is suggested. Most books on cancer are full of high calorie/high protein recipes that may be appropriate for some cancer patients but are not very likely to be palatable to a terminally ill patient who has lost interest in food. The patient himself is the best judge of the foods that are appropriate to serve. As the disease progresses the family needs to understand that continuing to encourage the patient to eat and drink does not work and forcing food and fluids may cause both physical and emotional discomfort and will not significantly increase the patient's life expectancy.
The body's ability to digest and use food is changed in the later stages of terminal illness. Liquid supplements of food through tubes in the nose or directly into the stomach cannot be expected to result in weight gain or to significantly lengthen life. Hospice has cared for patients with cancer receiving these feedings. These patients continued to lose weight and in some cases developed problems with created discomfort such as nausea, vomiting, diarrhea, gastric distention. As with intravenous fluids, the tube must be placed in order to deliver liquid food to the body and the family must manage and monitor carefully to prevent displacement of the tube. Again, the quantity vs. quality of life must be weighed.
Two essential parts of the Hospice philosophy are the belief that death is a natural process and that the patient and family have the right to make choices regarding care. Hospice is founded on the belief that the body adapts as disease progresses and should not be interfered with unless there is clear evidence that benefits to the patient will outweigh any discomfort. But the ultimate decision is the patient's and family's. Hospice team members provide information, facilitate discussion regarding these difficult decisions, help to explore concerns and feelings to clarify values as part of the decision making process. Once the decision is made by the family and patient, it is the role of Hospice team members to give their support to that decision.
Spiritual Concerns
Those who face death reach for medical and spiritual resources, among others, to make sense of what is happening to them. Though the spiritual journey is ultimately a personal one. We all share the fact that we are on a pilgrimage from birth to death. Spiritual suffering sometimes arises because people have been taught that spirituality is the same as religion. People can be spiritual in many different ways but may not attend a church, mosque or synagogue. Today we recognize that people find the most important values and meanings in their lives in other ways which may be difficult to define.What we do know however, is that our patients can experience not only physical and emotional pain but also spiritual pain. We are not just a physical being but are more complex and can not be separated from our spiritual being. Since spirituality has to do with the direct experience of those things in life that we judge to be of value, our hospice team would like to help you and your family identify the wisdom you have gleaned over your lifetime about existence, the transcendent, the meaning and purpose of your life and your relationship to other living things.
Some reasons for spiritual suffering are:
- Anger at God or loss in the meaning of justice
- Fear of pain
- Fear of the unknown
- Regrets about one's life or a specific episode in one's past
- Fear of dying itself
- A sense of isolation from God
- Questions about the meaning of life and its purpose
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