End of Life Care

End of life care refers to health care provided in the time leading up to a person’s death. End of life care can be provided in the hours, days or months before a person dies and encompasses care and support for a person’s mental and emotional needs, physical comfort, spiritual needs and practical tasks.⁴¹
End of life care is most commonly provided at home, in hospital, or in a long-term care facility with care being provided by family members, nurses, social workers, physicians and other support staff.⁴¹
Decisions on End-of-life care are often informed by medical, financial and other ethical considerations.⁴¹

1. Supportive measures:⁴²

1)Relief from dyspnea:
Oxygen may be used to alleviate shortness of breath in some cases but there is no significant evidence to generalize its practice. Morphine provides significant relief from respiratory insufficiency and should be offered according to established clinical protocols available.

2)Relief from pain and other symptoms:
Paracetamol, or codeine with paracetamol gives relief from moderate pain. Stronger analgesics, including morphine, should be used when appropriate to keep the patient adequately comfortable. Inj. Morphine 5-10 mg bolus followed by continuous infusion of 50% bolus dose/hr, repeat bolus dose/titrate infusion dose. The WHO has developed analgesic guides, pain scales and a three- step "ladder" for pain relief.

3)Infection control measures:
Infection control measures should be continued with reinforcement of environmental and personal protective measures, including use of N-95 mask use for caregivers wherever indicated.

4)Nutritional support:
Small and frequent meals are often best for a person at the end of life. Intake will reduce as the patient's condition deteriorates and during end-of-life care. Nausea and vomiting or any other conditions that interfere with nutritional support should be treated.

5)Regular medical visits:
Regular visits by health-care providers and the support team should be continued to address medical needs and ensure that infection control practices are being followed.

6)Continuation of ancillary medicines:
All necessary ancillary medications should be continued as needed. Codeine helps control cough, as well as pain. Other cough suppressants can be added. Bronchospasms can be controlled with a metered- dose inhaler with a spacer or mask.  Depression and anxiety, if present, should be addressed. Antiemetics may still be needed and fever treated if the patient is uncomfortable.

7)Hospitalization, hospice care or nursing home care:
Home-based care should be offered to people with TB based on the wishes of the person and the families. Appropriate infection control practices need to be followed. Institution based end- of-life care should be made available to those for whom home care is not feasible or desirable. Air borne infection control is essential at institutions providing end of life care to people with TB.

8)Preventive measures:
Oral care, prevention of bedsores, bathing and prevention of muscle contractures are indicated in all patients. Regular scheduled movement of the bedridden patient is very important. Encourage patients to move their bodies in bed if able. Keeping beds dry and clean are also important.

9)Provide psychosocial support:
Psychological counseling to the client and family caregivers is critical at this stage, especially to assist patients in the planning of decisions related with the end of life, and provide emotional support, especially in settings in which strong stigma is attached to the disease.

10)Respect for client’s beliefs and values at the end of life:
It is common for the person and family caregivers to develop or increase their interest in spiritual and religious matters once they perceive that the end of life is approaching. The health- care providers should respect those beliefs and should not impose personal values and practices that prevent the patient from seeking and finding comfort in the services delivered by faith-based organizations.

2. Consensus Position Statements:⁴³
1. Quality of dying is as important as other measures of quality of ICU care 
2. While discussing transitioning to complete palliative care, priority should be on minimizing the patient's suffering.
3. Along with terminal illness and impending mortality, severe irreversible disability burdensome to the person should be included as a reason for a treatment limitation decision.
4. ICU admission criteria should exclude patients whose disease/clinical status would clearly render ICU care to be of little or no benefit.
5. Once an End of life care plan is made for client, ICU admission or continuation in ICU is justified in the following circumstances to facilitate -Symptoms control when it is difficult outside the ICU, having ensured that the goals of care are well communicated to the family and are given aid

3. Constituents of a Good Death:⁴³
1. Effective communication and relationship with health-care providers
2. Performance of cultural, religious, or other spiritual rituals
3. Relief from emotional distress or other forms of psychological stress
4. Autonomy with regards to treatment-related decision making
5. Dying at the preferred place
6 Not prolonging life unnecessarily
7. Awareness of the deep significance of what is happening
8. Emotional support from family and friends
9. Not being a burden on anyone
10. Relief from physical pain and other physical symptoms.

4. Ten steps of End of life care pathway:⁴³
STEP 1) Physician reflective prognostic assessment of potentially inappropriate life sustaining treatments. Combining objective and subjective assessments is more reliable than scoring systems alone.
STEP 2) Consistency among healthcare professionals: Physicians and other specialists involved in the care should forge a consensus for the goals of care to be proposed to the client/family.
STEP 3) Early and as needed multidisciplinary patient/family meetings. In the infrequent instance of a capable patient in the ICU willing to participate in decision making, direct communication with due sensitivity should be attempted. The first multidisciplinary family meeting should be within 48 hours commonly occurring before clinical deterioration.
STEP 4) Shared decision making for treatment limitation decision: for capable and informed patients conveying preferences directly, it is settled ethically and legally that decisions are to be implemented without any further process. For a patient without capacity, if a valid advanced medical directive is in place with life sustaining treatment refusal, it must be respected and implemented and conveyed and conveyed to the appointed proxy and family.
STEP 5) Ensure consistency of care plan: Care of an ICU patient passes through multiple hands in a 24-hour period. Debriefing of members not participating in the multidisciplinary family meeting is essential.
STEP 6) Approval from secondary medical board: In compliance with Supreme Court ruling, any foregoing of life sustaining treatment decisions by the primary medical board should be referred to a secondary medical board. The Supreme Court directs an expeditious response within 48 hours.
STEP 7) Implement withdrawal of life sustaining treatments or withholding of life sustaining treatments decision: while implementing it, a palliative care should be in place. Palliative care is best provided in consultation with a palliative care specialist or in a palliative care unit.³⁰
STEP 8) Address physical, emotional and spiritual needs of the patient and family. Monitoring for physical symptoms and titration of doses is imperative. Emotional and spiritual /existential pain must be mitigated. Discontinue routine activities burdensome for the dying patient
STEP 9) Grief and bereavement support: The presence of physicians at the time of death is supportive education of caregiving teams for bereavement support is helpful offering distressed family members the opportunity to address queries or simply for support
STEP 10) Oversight and quality control of care process: A clinical ethics committee including Director or Chief Administrator or equivalent or nominee.

5. Reasons for communication intervention in End of Life Care:⁴³
1. To elicit complete information from the family/surrogates, i.e., history of the illness since patients are often too ill to be able to speak for themselves.
2. To build trust and confidence with patients and families essential to providing emotional support.
3. For conveying prognostic information ensuring family's comprehension and goal-concordant care
4. To break bad news tactfully.
5. To elicit the patient's values and wishes from family/surrogates to initiate conversations around Goals of care in patients facing terminal illness.
6. To accomplish shared-decision-making for Foregoing life sustaining treatment decisions.
7. So far it is possible to prevent or resolve conflicts with families.
8. To resolve conflicts within the treating team.
9. To provide colleagues a supportive climate to foster professional integrity and satisfaction preventing burnout.

6.Conduct of a multidisciplinary family meeting:
At the first meeting
● Have a suitable meeting place
● Ensure all relevant people attend the meeting
● Have enough time with minimal interruptions
● Use vernacular where necessary
● Build a relationship
● Value and respect patient/family Take care of nonverbal communication
● Gather information. Connect to the story. Talk less, hear them out.
● Allow expression of concern
● Identify and support emotion, talking freely helps families
● Provide information tactfully in non-technical language. Provide treatment options. Open conversations about the patient as a person and values.
● Be empathetic. Be kind
● Convey and discuss uncertainties. Recognize end of life needs early
● Avoid focusing on numbers and statistics and outline a plan making sure it is understood.
At subsequent meetings
● Ask-tell-ask at the beginning (ask what they know, then clarify, ensure they have understood)
● Update status;more frequently if things are not going well
● Allow expression of concern
● Identify and support emotions
● Ask-tell-ask
● Summarize and way forward.

7. Breaking bad news (Disclosure of unfavorable information):
Use the SPIKES protocol
● Setting up
● Perception
● Invitation
● Knowledge and Information
● Emotions and 
● Empathy

8. Legal Position on EOLC in India:⁴³
There are five key legal principles concerning End of life care in India-
1. An adult patient capable of making health care decisions may refuse life support even if it results in death
2. Life sustaining treatments may be withheld or withdrawn under certain conditions from persons who no longer retain decision making capacity.
3. Advanced Medical Directive that meets specified requirements are legally valid documents.
4. Active Euthanasia “is not lawful
5. The provision of pain relief measures that may incidentally shorten life are lawful and do not constitute: active euthanasia"