- Understand the stages of grief
- Discuss the dying process
- Review appropriate responses when interacting with a terminally ill person
- Understand Social Service Role
- Review Role of Hospice and Palliative Care
- Discuss documentation requirements
Overview of Death and Dying
- Dying is an inevitable event that is often difficult to accept and face.
- In practically every setting Social Servicess are going to encounter clients that are in, or who will, experience the grieving process.
- Social Services should take the lead in educational and group settings that are designed to help people become comfortable with the grief process.
Types of Losses
- Loss of a parent from old age or expected decline.
- Loss of children when they grow up (evidenced by moving away from home, graduating high school, getting married, and/or getting a new job)
- Menopause, the loss of continued ability to bear children.
- Loss of spouse, family, friends through normal aging process.
- Death of a child
- Death of a parent at any early age
- Loss of a job
- Car accident, fire, hurricanes, or other natural disasters
The Grieving Process (Source: Elizabeth Kubler Ross)
- Each person approaches death in a unique way and responses may vary. It is believed that people must progress through each stage before acceptance can be obtained. Sometimes the person vacillates between stages along the way and others can get stuck in a stage for a longtime or forever. Remember: Grieving takes as long as it takes. It is different for us all!
- Stages of grief do not necessarily happen in the same order nor is there always a clear beginning. Most people however go through each of the following stages in one way or another.
Kubler- Ross Model
- Stage One: Denial “NO this can’t be. There must be a mistake”.
- Stage Two: Rage and Anger “Why me? This just isn’t fair”.
- Stage Three: Bargaining “I’ll take better care of myself if only …”
- Stage Four: Depression “This is awful, woe is me!”
- Stage Five: Acceptance “ I will die soon and it is alright.”
Denial- is the refusal to believe the news or their true situation. “No! Not me!” It is a normal reaction and is usually temporary. It and can be resolved and then suddenly reoccur (inconsistent). Denial is often useful because it helps cushion the impact of the loss.
Anger- usually follows denial; it helps relieve the anguish of dying. Anger is hard to control, which often causes feelings of guilt. For the people around the dying person they may find themselves innocent targets and can have a hard time responding with understanding. Instead they may respond with anger, hurt feelings and guilt. A terminally ill person may resent that they will die while other people will remain healthy. Anger can be expressed in different ways by different age groups:
-An older person: sense of helplessness may turn to rage.
-An adult: may envy co-workers for their opportunities that he/ she can’t share.
-An adolescent: may resent friends who are having a good time without him/her.
-A young child: may feel parents didn’t give enough protection.
Bargaining- an attempt to postpone death. “Yes, me… but first….” It usually involves striking a bargain or making a specific promise in exchange for more time to live or to regain all or part of the loss. Bargains are usually made in secret, often with God. Deadlines with bargaining can include special celebrations, seeing a loved one (one more time), completing some unfinished business. If a deadline passes, the dying person will set a new one. Bargaining is part of Hope.
Depression- During this stage those having a loss tell themselves, “The loss is true, and it’s really sad.” “This is awful.” People at this stage become depressed and mourn the loss that has occurred. The depression may also be exacerbated by guilt or shame about mistakes in their past, for causing sadness to family, friends and/or for being a “burden” to them. They may think, “What’s the use?” Depression is a normal part of preparing to die and occurs often when symptoms of terminal illness become impossible to ignore. The person becomes realistic (the truth has registered: a person fully faces the fact that death is inevitable), and the reality can be very painful (grief and despair cause pain for some, quiet sorrow for others). They often mourn for what has already been lost (health independence, ability to meet responsibilities, uncompleted work- everything that is part of daily life) and for what is still to be lost (family, friends; all the future living that might have been).
Acceptance- The last stage and can be reached if the person works through the many conflicts and feelings that dying brings and fully acknowledges the loss. “Yes, I’m ready now.” At this point, the dying person is often tired or weak. It is a time of emotional calm with no great fear, joy or sadness; the dying person has given consent to death. The dying person may want fewer visitors, just one visitor or none at all. Acceptance is not a resignation, submission, defeat or doing nothing. Acceptance is a healthy coming-to-terms with reality, a gradual separation from people, life, ties, roles. It allows the world to go on without them while holding on to memories. They have finally reached peace. Those close to the terminally ill accept the loss and begin working on alternative to cope.
What Happens When a Person Dies
Signs of Approaching Death (Source: SAMC Hospice):
- Need for food and drink decreases as the body naturally conserves energy, which is expended for these tasks (often a major concern for families).
- Sensation, power of motion, and reflexes are lost first in the legs and then in the arms.
- More frequent sleep and difficulty arousing the patient
- Voice weakens and patient talks less
- Swallowing becomes more difficult
- Increasing confusion about time, place and identity of friends, relatives and other familiar people
- Increased restlessness, pulling at their bedclothes, and seeing people or things not visible to others
- Breathing patterns change. Periods of apnea (irregular breathing) lasting 10-30 seconds, respirations become rapid and shallow.
- Oral secretions may become cool and collect in the back of the throat (sometimes referred to as a “death rattle.” Hands, knees, and feet may become mottled (darker in color) and cool.
- Clarity of hearing and vision decrease slightly
- Incontinence of urine and bowel—often not a problem until death becomes imminent.
- Patient reports vivid dreams and visions, sometimes of deceased relatives.
- Being in the presence of the dead. Terminally ill patients frequently see or talk to someone who has already died.
- Preparing to travel or change. Communications about going home, standing in line or going on a trip may be a reference to the patient’s desire to complete the dying process.
- Seeing a place. Sometimes dying patients have glimpses of “another world.”
- Choosing when to die. Sometimes the dying wait to die until after they have had a chance to visit with a family member.
- Knowing the time of death. On most occasions, terminally ill patients seem to know when they are going to die.
How to identify that Death has Occurred:
Loss of control of bowel and bladder
Eyelids stay slightly open
Jaw stays relaxed and mouth slightly open
Skin color becomes uneven, blotchy and feels cold.
Appropriate Responses when Interacting with an Individual Who is Dying and their Loved Ones (Source: SAMC Hospice):
How to Best Respond when a Person has a Terminal Diagnosis (an expected loss):
- Try to gain an inner understanding of your own feelings about death, so you can better understand how the dying person feels.
- Respect the right of a person to handle death in his/her own way. Examples could be:
- To go along with the denial while not reinforcing it.
- Don’t take anger personally.
- Respect the need to bargain (help make some wishes come true).
- Help to relieve guilt. Let the person grieve. Accept the person’s death.
- Give of yourself to make the dying person’s last days more peaceful. Examples could be:
- Help meet physical needs;
- See that pain is relieved,
- Be open about death with the dying person.
- LISTEN to the dying person;
- Be alert for clues to unspoken emotional needs.
- Show you care and be available often.
- Help the person conduct unfinished business
- Encourage family visits (offer family a snack cart, drinks/ coffee if family is staying at bedside for extended periods of time)
- The family needs compassion, too. Concentrate on the family’s needs, listen to them, and try to comfort them.
- During the period of dying, family members may also experience denial, anger toward the dying person, etc. Talk with them; help them understand these feelings and reassure them that they are normal and okay so that they can reach peace. If you are uncomfortable with this then ask for help, such as from other IDT members, Hospice, the in-house psychologist and/or refer the family to grief support groups within your community.
- At death, help family members deal with practical concerns such as funeral arrangements, bills, etc. Listen when they want to express their grief.
- Long afterwards, keep them company. Listen when they want to speak about the dead person. Help them realize that life must go on in spite of this death. (If grief is excessive, suggest they get professional help). Try to be there on the anniversary of the death, write a letter or provide a phone call.
How to Best Respond when Sudden Death (an unexpected loss) Occurs:
- Family members suffer tremendous shock when a sudden death occurs because they’ve had no time to prepare, adjust or accept the loss. They need a great deal of help to accept the death and adjust to life again.
- Children should be allowed to share in family grief and attend services with the rest of the family if they want to. A child’s reaction to death may be anger at being “abandoned”, fear of having no one to take care of them, guilt that they may have caused death to happen and confusion about what has happened. You can help a child by answering all questions clearly and truthfully. Help them express their feelings, fears, fantasies. Reassure them that death is not their fault and that they will be taken care of. Don’t overdo it; they’re still children. Be patient if they bring up the subject of death again and again, as they try to understand. If possible try to prepare the child before the loved one dies. Talk about death when the subject arises naturally, such as when a pet dies.
- The key is to LISTEN and allow them to talk about their feelings. Often a hug is all they need and to know that they are not alone. This is not a time for the family to be alone. Their support group is critical. If they do not have much of a support group (family, friends, church), than offer a list of support groups available in their community.
Keep in mind that people grieve at their own pace. Since grief is cyclic in nature, waves of emotion are likely to come and go through the remaining years of their lives. The person grieves for the person who is now absent and also for the permanent change that a death brings in their own lives.
Social Service Role
- Ensure the resident and decision maker are fully informed of the resident’s medical condition (i.e., schedule a care conference, a meeting with the MD, etc) so that the resident has the opportunity to express his/her wishes clearly and to ensure the goals of care are clarified.
- Discuss DNR orders and, if appropriate, up-date the POLST form or Advance Directive
- DNR (Do Not Resuscitate) orders are written instructions from a physician telling health-care providers not to perform CPR or related procedures on a patient. It covers only CPR and related procedures and must be authorized by a physician and is issued with the consent of the Resident, or the person acting on their behalf. It often does not apply during surgery and can be cancelled anytime.
- When CPR is given, chest compressions and artificial respiration is given. Related procedures can be Intubations, IV Drugs or Electric Shock, Mechanical Ventilation. Someone may not want CPR because there is no expected medical benefit, quality of life would suffer as a result, and death is expected soon.
- If you do not have a DNR order, health care providers are required to begin CPR in an emergency.
- Discuss advantages of having an Advanced Directives, which include POLST forms, living wills or Durable Power of Attorney’s, if the person does not have one.
- Advanced directives allow you to give directions about your future medical care. They can limit life-prolonging measures such as CPR, IV’s, feeding tubes, Respirators, Dialysis and can address pain relief, too.
- Discuss funeral arrangements with the resident and/or responsible party and address emotional/ legal/ and financial issues, if any.
- Review options with the family member and the Resident regarding Hospice and comfort (palliative) care.
- Work with the staff and the IDT to ensure care plans are updated to reflect the resident’s (or decision maker’s if resident is not capacitated) choices/ preferences related to end-of-life care and support.
- Advocate on behalf of the resident/ decision maker to ensure their needs and preferences are being honored.
- Support staff and advocate that care not only address physical needs, but also honors the resident’s emotional, psychosocial, and spiritual needs.
Relating to People with Terminal Illness (Source: SAMC Hospice):
- To relate to the terminally ill you need to view death as a normal process of life and to accept the eventuality of your own death. If you cannot accept your own death you will probably be uneasy about talking to someone who is terminally ill.
- If you have trouble talking about certain aspects of death, inform the dying person of your limitations in order to take the guesswork out of the relationship.
- The religious or philosophical viewpoint of the dying person should be respected and your own personal views should not be impaired.
- As a social worker you should convey verbally and non verbally that you are willing to talk about any concerns that a person wants to discuss. Touching or hugging is very helpful, but remember the person has the right not to talk about concerns if he or she chooses. What you should convey is you are emotionally ready, you have the time and you care.
- If a terminally ill person has questions about his or her illness answer them as honestly as possible and if you do not know the answer find a physician who will accurately provide the information.
- A dying person should be allowed to accept the reality of the situation at his or her own pace. Relevant information should not be forced upon the person, but it should not be withheld.
HOSPICE (Source: SAMC Hospice):
- One of the main referrals that can be made is Hospice Care, which can provide a facility support and expertise regarding palliative care along with special attention to the family/resident. It can also assist a facility or family by covering the cost for certain palliative care equipment, medications, etc. that other services cannot.
- Hospice assist facilities by providing psychological, spiritual and nursing expertise to residents/families/staff and can be utilized as a non-biased entity with emotional/anger issues.
- Hospice should be regarded as an added service that can expand quality care. Anytime there is a death/dying situation where there exists challenging family dynamics (denial, anger, depression, etc.) Hospice should be considered.
- It is important to maximize Hospice benefit by referring to them in a timely manner. Hospice is not necessarily of great benefit to the resident or family if referred only days before the resident could potentially pass away. Hospice is best utilized when there is a sufficient amount of time to assess and establish services with the resident(s) and/or families
- Must have a terminal diagnosis (6 months or less)
-most common diagnosis for Hospice include: cancer, CHF, renal failure, COPD, Alzheimer’s Disease/ end stage dementia, CVA/ strokes
- M.D. willing to follow for Hospice services
- Primary care person willing to give/ arrange for care
- Wishes palliative care vs. curative care
- Hospice has four levels: Routine home care, General Inpatient, Continuous care, Respite care
Why Hospice is beneficial for a SNF:
- Hospice nurses are pain and symptom management experts
- Clinical, Spiritual, and Emotional support for the patient, family, and staff
- Medicare/ Medical Benefit
- Bereavement follow-up for patient’s family up to 18 months after the death of the patient
What is Palliative Care?
- Palliative care is a treatment plan that provides symptom control and comfort care while respecting the patients desire for no further aggressive care and treatment. A patient in Hospice Care will not receive aggressive rehabilitation therapies or treatments. The main concerns are controlling pain, nausea and vomiting, anxiety and other distressing symptoms. All care for the patient must be approved by Hospice.
Social Service Documentation Responsibilities
- It is important for the Social Service Department to consider and assess end of life issues with the resident and family anytime there is a death/dying issue or potential.
- Social Services are looked upon by State to be the key component in monitoring/assessing a resident’s situation and to decipher if and what community resources can be utilized, including Hospice.
- The SSD is encouraged to make periodic progress notes on each Hospice or Death/Dying resident to observe for needs and any psychosocial well-being issues. In regards to this documentation, Social Services is expected to evaluate the resident (and maybe even the family) in several areas. These areas include but are not limited to:
-Spiritual Care -Emotional well-being
-Support Systems -Resident/Family Strengths
-Resident/Family Needs -Community Resources
-Services Provided/Needed -Ability to Cope
-Arrangements Made/Needed -Closure of Personal Affairs
With the above areas in mind Social Services should document the following in the medical record;
-Observations -Phone Calls
-Meetings/Conferences -Visits/ One to Ones
And intervene as appropriate.
Sample Follow-Up Hospice Note:
"SSD provided 1:1 visit with resident this a.m. Resident continues under Hospice care with(\name of agency). Resident continues to be unresponsive when name is mentioned and did not respond to SSD’s light touch of his hand or sound of SSD’s voice. Resident shows signs of being comfortable as his body is relaxed and nursing staff report that he has not been exhibiting any signs/symptoms of pain. Activities continues to provide weekly visits with aroma therapy, rubbing hands with lotion, etc. (see Activity note dated 00-00-00). Daughter visits daily with husband and sometimes with children. Resident is Catholic and the facility priest (Father Mike) visits resident weekly. SSD inquired to daughter on 00-00-00 about resident’s funeral services/arrangements. Daughter stated that all arrangements have been made and personal affairs completed with the assistance of family attorney. IDT and Hospice MSW agree that resident does not appear to be in any emotional/ psychosocial distress. SSD will continue to provide periodic visits to resident and emotional support to daughter as needed."
- Care Planning may also be necessary not only for the resident, but also for their roommate.