Hospice and palliative care both focus on helping a person be comfortable by addressing issues causing physical or emotional pain, or suffering. Hospice and other palliative care providers, have teams of people working together to provide care. The goals of palliative care are to improve the quality of a seriously ill person’s life and to support that person and their family during and after treatment.

Hospice focuses on relieving symptoms and supporting patients with a life expectancy of months not years. However, palliative care may be given at any time during a patient’s illness, from diagnosis on. Most hospices have a set of defined services, team members and rules and regulations. Some hospices provide palliative care as a separate program or service, which can be very confusing to patients and families. Hospice care is a family-centered approach that includes, at a minimum, a team of doctors, nurses, social workers, psychologists and physical therapists. They work together focusing on the dying patient’s needs, be they physical, psychological, or spiritual. The goal is to help keep the patient as pain-free as possible, with loved ones nearby until death. The hospice team develops a care plan that meets each patient's individual needs for pain management and symptom control.

The team consists of:

• Hospice physicians

• Nurses

• Social workers

• Psychologists

• Clinical Pharmacists

• Physical therapist

The KHCC vision

As an advocate and provider of excellent patient care, KHCC introduced for the first time in Jordan quality compassionate care for patients who are in their incurable terminal stages of their disease. Once the cancer has metastasized to other organs and took hold of the major vital systems in the body, palliative care is the only remaining option. Palliative care offers symptom relief, emotional support and pain management. The focus of hospice and palliative care (HPC) relies on the belief that each of us has the right to die pain-free and with dignity, and that our loved ones will receive the necessary support to allow us to do so. Hospice care neither aims to hasten death nor to postpone it. It basically allows a natural death upon the wish of the patient and his/her family when the patient is not responsive to any kind of treatment.

A key objective of this program is to obtain high-quality palliative care to control pain and symptoms and to preserve the highest possible quality of life for as long as life remains, in addition to offering spiritual support. Each patient’s situation is evaluated by the attending physician and is assessed by the Hospice and Palliative Care Interdisciplinary Teams, which offers holistic care for terminally ill patients and their families.

Provided Services

1. Home Care:
   Many people who are terminally ill, choose to be cared for while remaining at home; a service that we offer at KHCC. The program provides a comprehensive service for home care after careful discharge planning, that is coordinated between the responsible physician, assigned nurse(s), dietician and the social worker. The number of weekly visits depends on the patient’s condition and family requirements.
   
   Home care patients are provided with a variety of Home Care Equipment that ensures good care and comfort. The equipment includes:

   1. Walkers

   2. O2 cylinders

   3. Wheelchairs

   4. Air mattresses

   5. Portable suction machines

   6. Blood sugar monitoring machines

   7. Patient Controlled Analgesia (PCA); a technique whereby patients can self-administer parenteral analgesics.

   8. Transcutaneous Electrical Nerve Stimulation (TENS); patients carry a small,
      box-shaped device that transmits electrical impulses into the body through
      the electrodes to interfere with pain signals. It is also used for rehabilitation
      and muscle stimulation in patients with prolonged bed stay.
       

2. Inpatient Unit
   Those admitted as in-patients frequently suffer from uncontrolled physical or psychological symptoms, which require continuous medical care. In addition, some patients in the process of active death are also admitted if necessary.
    

3. Bereavement Services
   KHCC realizes that the pain of loss for a family continues after the death of a loved one. The Hospice and Palliative Care team conducts bereavement home visits and offer grieving family members emotional and spiritual support.
   Do Not Resuscitate (DNR) or FULL CODE
   
   Every new patient admitted to KHCC is introduced to the services provided by the palliative care and hospice team at KHCC. Patients and their families are educated about the care codes and are requested to make a decision on the caring orders they wish the patient to receive, in case he/she reached a terminal stage. This decision must be reached early upon the patient's admission to KHCC, so as not to be taken under stress or in despair.
   The two care orders are (1) "Do Not Resuscitate" (DNR) order, and (2) Full Code order.
   The DNR code implies that the patient will not be resuscitated in the event of cardiac or respiratory arrest; these patients are classified as hospice patients. It has to be noticed that DNR order does not imply in any way that a patient will receive less care or attention. It just means that the natural and peaceful process of death will go uninterrupted. This will alleviate patients and their families of the stress and pain of going through unnecessary interventions.

The role of Caregivers

Introduction to caregivers
Caregivers provide support to a person in need of help, regardless of how many hours per week is spent providing support. Sometimes, the caregiver may live with the person they are caring for, providing assistance with daily tasks/needs. Other times, less support may be needed and a caregiver may only make scheduled weekly visits or calls. The amount of support varies from patient to patient and depending on the caregiver’s relationship to the patient. Being a caregiver involves an investment in time, energy and support.
A caregiver might do one or more of the following:

• Drive a family member, friend or neighbor to doctor’s appointments.

• Make meals for someone.

• Help someone with household chores such as cleaning, grocery shopping, lawn care, etc.

• Make regular phone calls to someone to “check in” on them.

• Provide hands-on care, including bathing, help in eating, toileting, or other help.

• Help someone make decisions about medical questions.

• Assist someone with personal business affairs, such as bill paying.

Care-giving often comes with new responsibilities and unfamiliar tasks, yet most caregivers never receive formal training in the tasks they are about to undergo. The following information may help you with a current situation or prepare you for what may happen.

End-of-Life Care
Hospice is end-of-life care that involves a team-oriented approach to quality medical care, pain and symptom management, as well as emotional and spiritual support tailored to individual patient’s needs. Hospice is available to anyone who has a life expectancy of six months or less. Hospice provides medical equipment and medications related to terminal illnesses. Support is given to you as the caregiver, including social workers to talk to, nurses and aides to teach you how to provide hands-on care.

Providing Physical Care
Part of care-giving is providing physical care to your family member or friend. It is important that the caregiver receive appropriate training to provide physical care. Ask your family member or friend's doctor, nurses, and other health professionals about the types of care that may be required of you. To help you and your family and friend’s health care providers, we suggest keeping a log of your loved one’s medications and reactions to them, as well as their responses to: physical therapy, treatments, and all physical symptoms such as pain or tiredness.

Additional physical care Questions
How can I protect my back while lifting and moving a patient?
If possible, have someone help you with the morning and bedtime routines. Sometimes your family member or friend may need a lot of assistance, since getting up and going to bed are often the most challenging times of the day.

How should I care about oral (mouth) hygiene?
Practice good oral hygiene that includes teeth brushing, denture cleaning, and cleaning around the gums, preferably after every meal. Persons with disabilities or medical problems may need special care in addition to daily hygiene routines.

WRONG QUESTION
If your family member or friend is incontinent, it is especially important to ensure that he or she is clean at all times, to use protective (barrier) creams, and to change incontinence aids and clothing as often as needed. Poor hygiene can result in diaper rash and blistering of the skin. Poor hygiene also can contribute to the development of decubitus ulcers (pressure sores) and other problems that cause pain, discomfort and serious, even life-threatening infections.

WRONG QUESTION
Older persons with limited movement should be turned in bed on a regular basis to prevent pressure sores. Correct bedding, such as sheepskin or egg carton bed coverings and/or an air mattress, help to prevent pressure sores. It is important to move older persons with disabilities at least once an hour, to reposition them, to do range of motion exercises, and to have them sit in various chairs that offer sufficient support.

Providing Comfort Care
As a caregiver you may need to provide for all aspects of your family member or friend’s comfort. People who are very ill or near the end of life have complex needs so it is important to know various ways to provide support.

Physical Comfort
It is very important for you to ask the person you are caring for if they are comfortable. Their health care providers need to know if they are experiencing physical pain, breathing problems, confusion or other symptoms so that they can work to ease the distress. By talking with the person’s physician and other healthcare providers, pain medication and other therapies can be provided to achieve a level of comfort.

Throughout the day, ask your family member or friend if they are comfortable. If they are experiencing pain ask them to describe the pain rate it on a scale of 0-10. Write down everything they say and review this before you call the physician and health care provider. If you have specific questions, write them down too. As you talk with the physician or health care provider, write down the answers you receive so that you can refer to the information later.

Emotional and Spiritual Comfort
In addition to physical pain, your family member or friend may experience emotional and spiritual pain. They are experiencing many losses including the loss of control over their own life. It is important for you to continue to explain what is happening with your family member or friend's care, condition, and any other changes. Take some time each day to talk to your family member or friend about their feelings and to share your feelings with them. Be patient and listen to what they want to share with you. Whatever feelings they have - let them know that they have a right to feel that way; do not try and talk them out of their feelings. Your family member or friend may wish to discuss their fears, concerns or distress with someone else, encourage them to do so.

Exercise
In consultation with your family members or friend's physician and physical therapist, you can plan a routine of exercises.
Exercise, even for bed and wheelchair-bound older persons, helps to improve:

• Circulation (blood flow)

• Lung and heart function

• Posture

• Mental alertness

If appropriate, encourage your family member or friend to do a little more physical activity each week. Vary the exercises and workout with them to provide encouragement. If they are confined to a bed or wheelchair, try to get them to exercise at least five minutes every hour, and regularly change their position to prevent pressure sores.
Getting and Staying Organized

Keeping track of the many responsibilities of care-giving can be daunting. If your family member or friend needs a lot of help, a well-planned routine can make the more demanding parts of your care-giving day go more smoothly, take less time and help to ensure that your family member or friend does not develop unnecessary problems.
You might also make lists of:

• Medical personnel with their area of expertise, addresses and telephone numbers

• Home healthcare agencies

• Other people who can help or fill in, if you need additional help

• Medications, when they are to be taken, and where they are stored

• Exercise schedules and directions

• Emergency contacts
   

Pain

Many people have incorrect information and concerns about treating their pain.

• It is the doctor and nurse's job to work out the best way to control pain. To do this, they rely on you to tell them about your pain. They can't do their job unless you do yours.

• Pain is not a normal part of growing old. Pain in older adults, just like pain in any other age group, is a signal that something is wrong. You need to talk about this with a doctor or your family caregivers so the problem can be treated.

• Even when people are confused, oftentimes they can let you know when they are in pain. It may be helpful to look for changes in mood, activity level, body language, and facial expressions.

• It is very unusual for people who have pain to become addicted to pain medicines. They are taking the medicines for a good reason, to relieve their pain, not to "get high." People who have pain need to be treated, so concerns about addiction, in most cases, should not enter into the doctor's decision to prescribe these medicines.

• There is a difference between addiction, which is a psychological craving for medicine, and physical dependence. People who need opioids (narcotics) for a period of time may develop a physical dependence on these medicines, experiencing uncomfortable symptoms, such as sweating, chills, and nausea, if the medicine is abruptly stopped. This is only a temporary situation that can be prevented by slowly reducing the medicine over a period of days or weeks.

Pain Care Bill of Rights

As a Person with Pain, You Have:

• The right to have your report of pain taken seriously and to be treated with dignity and respect by doctors, nurses, pharmacists and other healthcare professionals.

• The right to have your pain thoroughly assessed and promptly treated.

• The right to be informed by your doctor about what may be causing your pain, possible treatments, and the benefits, risks and costs of each.

• The right to participate actively in decisions about how to manage your pain.

• The right to have your pain reassessed regularly and your treatment adjusted if your pain has not been eased.

• The right to be referred to a pain specialist if your pain persists.

• The right to get clear and prompt answers to your questions, take time to make decisions, and refuse a particular type of treatment if you choose.

How to Manage Your Pain
There are many treatment methods that can reduce and manage your pain. Most pain can improve with treatment that usually consists of a combination of medicine and non-medicinal strategies. It is crucial to talk to your doctor about your pain so he or she can provide the help you need to feel better.
Taking action to manage your pain will not only benefit you, but also everyone around you. Your pain, and worrying about you, can take a toll on friends and family members as they, too, can experience worry, depression and exhaustion. Just as you need their support, they need yours; hence, the best thing you can do for them is to take care of yourself and your pain.

Guidelines for Managing Pain

1. Use pain medicines as prescribed.
   If the prescription says to take the medicine at certain times or at certain time intervals (for example, every six hours), make sure you, as the care-giver, adhere to those instructions. Do not wait until the pain comes back to give the medicine. This will cause needless suffering. One of the important ways that pain medicine works is that it helps to prevent episodes of severe pain. In order to do this, there has to be a certain amount of medicine in the blood. This is why the doctor prescribes taking the medicine at regular intervals-to be sure that the blood level stays high enough.

2. Insist on good pain control.

3. Let your physician(s) know if your pain treatment is not working.

4. Encourage relaxation.
   Position yourself carefully with pillows and soft seat cushions. Breathing slowly and quietly helps the mind and body to relax and helps decrease pain.
   The more you understand about the prescribed pain treatment, the better off the patient will be. Below is a list of suggested questions to ask the attending doctor:

   1. What are all the options available for treating the pain?
       

   2. What are the benefits of each treatment?
       

   3. What are the risks of each treatment?
       

   4. What are the possible side effects?
       

   5. How can treatment help me (or the patient) be more comfortable and active?
       

   6. How long will it take for the treatment to work?
       

   7. What should I do if the treatment does not work?
       

   8. Besides taking medicine, what else can be done to manage the pain?

Grief and Bereavement

Grief
Grief is how one reacts to a loss. Grief reactions may be experienced in response to physical losses, such as a death or in the response to symbolic or social losses such as a divorce or loss of a job. All loss involves the absence of someone loved or something that fulfills a significant need in one’s life.
Grief may be experienced in the combination of mental/emotional, physical, or social reaction. Mental/emotional reactions can include anger, guilt, anxiety, sadness, and despair. Physical reactions can include sleeping problems, changes in appetite, physical problems, or illness. Social reactions can include feelings about taking care of others in the family, role changes in the family, returning to work, or differences in social situations.
There is no right or wrong way to grieve after a significant loss. Most discover how to eventually move on with life, even though the grief experience is a difficult and trying time.
Coping styles depend on one’s personality and their relationship with the person who has died. This experience can also be affected by one’s cultural and religious background, coping skills, mental history, and their support system. Taking care of yourself, accessing the support of friends and family can help a person get through difficult times.

Bereavement
Bereavement is the period after a loss during which grief is experienced. The time spent in a period of bereavement depends on how attached the person was to the person who died, and how much time was spent anticipating the loss.

Some view the process of bereavement as having 4 phases:

• Shock and numbness: Usually occurring soon after a death, this is evident when the person finds it difficult to believe the death has occurred; is feeling stunned and numb.

• Yearning and searching: As shock and numbness recede, there remains the tendency to “forget” the person has died. Perhaps one catches a glimpse of somebody who reminds them of the deceased, or you expect them to be there when you first arrive home.

• Disorganization and despair: As the reality of the absence of the person who died settles in, it is common to feel depressed and find it difficult to think about the future. You may be easily distracted, or have difficulty concentrating and focusing on any one task.

• Reorganization: As one slowly makes the adjustment to all the ways in his or her life that have changed as a result of the loss, a sense of reorganization and renewal begins to evolve. Life is forever changed after a significant loss, but you slowly learn how the different aspects of your life become reprioritized as you “pick up the pieces” and begin to move on. It is not that you forget about the person who died, but you have begun to learn how to live with this knowledge.

Anticipatory Grief and Mourning
When a patient or family is expecting a death, it is normal to begin to anticipate how one will react and cope when that person eventually dies. Many family members will try to envision their life without that person and mentally play out possible scenarios which may include grief reactions and ways they will mourn and adjust after the death.
Anticipatory grief reactions may include feelings of depression, extreme concern for the dying person, and preparation for the death. Anticipatory grief is a natural process that enables the family more time to slowly get used to the reality of the loss. People are able to complete unfinished business with the dying person (for example, saying “good-bye,” “I love you,” or “I forgive you”). Anticipatory grieving may or may not occur and feelings following the death may be much different from what was anticipated before the death.

Sudden Loss
The grief experienced after a sudden, unexpected death is different from anticipatory grief. Sudden, unexpected loss may overwhelm the coping abilities of a person which may result in feelings of devastation and/or an inability to function “normally.” A person may not be able to realize the total impact of their loss. Even though one may be able to acknowledge that the loss has occurred. The full impact of this loss may take much longer to fully comprehend than in the case of an expected loss.

Complicated Grief
Complicated grief reactions are different from the grief reactions described above. Depressed or anxious moods, disturbed emotions and behavior, major depression, substance abuse, and even posttraumatic stress disorder are some of the ways in which grieving can become complicated. Grief becomes complicated when it is masked by significant physical or behavioral symptoms, or when it is exaggerated. If an individual has personality, developmental, or emotional issues, grief therapy may be needed.


The Grief Experience

1. Talk about your loss
   Take the time to seek comfort from friends who will listen. Let them know you need to talk about your loss. People will understand, although they may not know how to respond. If they change the subject, explain that you need to share your memories and express your sadness.

2. Forgive yourself
   For all of the things you believe you should have said or done. Also forgive yourself for the emotions such as anger, guilt or embarrassment you may have felt while grieving.

3. Eat well and exercise
   Grief is exhausting. To sustain your energy, be sure to maintain a balanced diet. Exercise is also important in sustaining your energy, find a routine that suits you – clear your mind and refresh your body.

4. Indulge yourself
   Take naps, read a good book, listen to your favorite music, go to a ball game, rent a movie. Do something that is fun, distracting and that you personally find comforting.

Supporting Friends or Family Who Are Grieving

• Acknowledge all feelings. Their grief reactions are natural and necessary. Do not pass judgment on how “well” they are or are not coping.

• Be specific in your willingness to help. Offer assistance with chores such as childcare or meals.

• Identify friends who might be willing to help with specific tasks on a regular basis, such as picking up the kids from school or refilling prescriptions.

• Acknowledge that life won’t “feel the same” and the person may not be “back to normal.” Help the person to renew interest in past activities and hobbies, when they are ready, or discover new areas of interest.

• Know and accept that how your friend or family member copes with their loss may be very different from how you would cope, even in the same situation.

• There is no right way to grieve and mourn. Be very careful not to impose your expectations on someone else, no matter how much you think it might “help.”