Continuing Education Activity
Termination of life support is an important intervention that every physician needs to be aware of, as any patient who has reached an ‘end-of-life’ stage and consenting to it would qualify for its initiation. Providing appropriate and timely end-of-life care has been shown to improve the quality of life of the patients. When indicated and performed well, ‘termination of life support’ helps the patient achieve a ‘good death’ and provides comfort to the bereaved family. This activity highlights the significance of termination of life support for the interprofessional team.
- Describe the process of termination of life support.
- Outline the steps involved in the preparation of the termination of life support.
- Review the clinical significance of the termination of life support as part of the care to the terminally ill patients.
Physicians in both inpatient or outpatient capacity are increasingly exposed to patients with terminal illnesses in both acute settings as well while dealing with patients with chronic illnesses. In the inpatient scenario, critical care and hospitalist physicians are often charged with the management of severely ill patients that reach the 'end-of-life' stage because of an acute catastrophic event or a rapid deterioration or complication of one or more chronic comorbidities.
Exposure to patients with advanced age, presence of an increasing number of chronic illnesses (such as cancer, heart failure, cerebrovascular accident, and renal failure), rising number of invasive procedures, and more recently, the effects of the novel Coronavirus infection of 2019 (COVID-19), have led the doctors caring for these patients to manage situations where death is imminent.
An end-of-life patient is defined as one with a life expectancy of fewer than 12 months, per the UK General Medical Council. This includes patients likely to die within a few hours or days. If given a choice, most people, including those who are healthy, in the West, would like to die at home. Due to the factors listed above, physicians need to be aware of the principles of end-of-life care. Physicians help take care of their patients with curative intent, but when that is not possible, it is equally important for them to provide the patients the option of what many patients describe as a dignified 'good death.' Most patients describe this as "pain-free, distress free, with good symptom control, preferably in a place of choice with people of choice around them." Many would also like to be a minimum burden on their families, get their personal affairs in order before dying, and maintain mental clarity if possible while retaining a sense of value for life spent with a feeling of closure.
This may be summarized in the all-encompassing phrase "comfort measures." Application of comfort measures for the terminally ill patient hence requires an understanding of the disease process, therapeutic measures for symptom relief, social situations, and mechanisms involved in the placement of such patients.
The consideration for the need for comfort measures should be in the back of the treating physician's mind as they provide care to severely ill patients whether admitted to the hospital or seen in the clinic. This is especially important while treating acutely sick patients in multiple organ failure, including those in respiratory failure on mechanical ventilation or patients who are diagnosed with advanced-stage cancer or neurodegenerative diseases.
Terminally ill patients, especially those likely to die within the next 30 days, should be communicated about the 'goals of care,' including their preferences for 'end-of-life' care. This is the most important part of this process and needs to be handled in a delicate, sensitive, and empathetic manner keeping in mind any cultural and religious differences if present. The aim is to provide honest information with realistic expectations while preserving hope.
While direct communication to the patient is preferable, in many instances, it is not possible due to the patient's clinical condition, rapidity of their deterioration, or other factors, then the legal surrogate of the patient needs to be talked to. It is important to confirm the legal status of the surrogate medical decision-maker, especially in complex social situations, before proceeding with any important medical discussion. Once this is established, it is helpful to have one team member designated to be the medical team representative. This helps build mutual trust and maintain the continuity of care. The main aim of 'end-of-life' care is to identify and relieve any physical and psychological symptoms with the mitigation of emotional and spiritual distress.
If the patient is receptive, then discussing end-of-life care is always helpful. If the patient becomes anxious and stressed, then such a discussion may have to be temporarily deferred. If the patient is cognitively impaired due to any acute or chronic etiology, then the legal surrogate, and not the patient, should be contacted about any discussion related to the ‘goals of care.’
The following personnel is key to the process of provision of comfort measures to the terminally ill patient:
- The patient and their family
- The treating physician/ consultants
- Nurses (inpatient or home health/ hospice)
- Social worker
- Care manager (or administrative person assisting with placing the patient in a hospice facility, arranging home hospice, or coordinating the financial needs for comfort care)
- Specialty physicians from related fields who can assist the process (Palliative Medicine, Pain Specialists & Hospice Medicine)
- Clinical pharmacist (especially in the inpatient setting)
- Spiritual staff/chaplaincy
Meeting with the patient or their family should be planned in advance and ideally coordinated with many of the personnel listed above.
The medical discussion about potential termination of life support should be led with empathetic open support for the family, with importance on knowing the patient preferences (from the patient directly or via the legal surrogate if needed). Family and the patient's perception of the clinical condition, the management plan, the expected clinical course, and the outcome should be explained in detail without the use of medical jargon. The level of care provided needs to be explained, and it may need to be adjusted to the patient's preferences. It would help confirm the comprehension of medical information conveyed by having the legal surrogate summarize the main points at the end of the conversation. The family members should be informed about what the dying patient may look, sound, and smell like after the initiation of comfort care. The palliative care team can be constructive in guiding this conversation.
If the patient is expected to survive for more than a few days, then a multi-disciplinary plan (with a social worker, primary care physician, the hospice care team, etc.) is needed. The children must be informed about their family member's impending death sensitively with the help of the child-care experts. Religious and spiritual support is provided by religious leaders or priests, who are encouraged to pray with the patient and family members.
Discussions about the possibility of organ donation, if appropriate, and/or autopsy, if indicated, should be done at this time. It is important for the clinical team NOT to have a detailed discussion about organ donation. This must be done by the organ transplant team to avoid any conflict of interest. A social worker can help the family plan for the funeral and financial arrangements post-death.
After the basic plan has been discussed, it is important to establish the 'Code status,' including the patient's choice about resuscitation and intubation, with a plan for ‘no escalation of care’ if the clinical condition deteriorates. During the discussion related to the 'termination of life support,' it is important to inform the family about what the process involves, including a plan to discontinue regular diagnostic interventions, commencing medications for pain and symptom control, and the removal of invasive lines and tubes (like the endotracheal tube, nasogastric tube, arterial line, etc.). Typically, one intravenous line and the bladder draining catheter are maintained to provide pain and other symptom control medications (including anti-epileptic drugs if the patient already needed them). It is helpful to inform the family of what would be expected after the life support is withdrawn, including the plan for transfer to in-patient hospice care or home hospice if the patient survives beyond a certain time. Emphasizing the transition to the 'initiation of comfort care' rather than 'withdrawal or termination of life support' during the discussion is better, in the author's opinion.
During the conversation, it helps establish a rough timeline about the palliative extubation and termination of care, with reasonable accommodation of the family requests, pending arrival of close family members from geographically distant locations. Relaxing the institutional visitor policy may be needed while taking care not to compromise the privacy of the patient or family as well as the privacy of the neighboring patients and their families. Accommodating requests for religious prayers and the use of non-pharmacologic stress-relieving measures like music and aromatherapy can make a positive impact on the grieving family members.
On the day and time of patient's choice, with the people of his/ her choice at the place chosen by the patient (ideally), the 'Comfort care' is initiated with a pain medication infusion (usually an opiate) with an anxiolytic drug (usually a benzodiazepine). This is followed by palliative extubation with the use of symptom control medications for control of anxiety, nausea or vomiting, dyspnea or air hunger, oral and endotracheal secretions, fever, with the use of artificial tears and oral hygiene measures. Depending on the patient's preference, a balance must be maintained between appropriate pain control and preservation of wakefulness. Comfort feeding and extra oxygen may be allowed.
Family members are encouraged to spend time with the patient, with efforts to minimize the nursing interventions. The family is encouraged to have legacy building measures like taking pictures, making handprints with the patient if possible.
If the patient survives more than the expected duration, he/ she may be moved to an in-patient hospice care or home hospice care with the required support. After the death of the patient, the medical team member needs to confirm it, note the exact time, complete the death certificate, and any related documents. It is humane to contact the grieving family and express the medical team's condolences. It is important for the medical staff to address and relieve their own moral and emotional stress from such clinical encounters. Informal and formal measures, including counseling, can be used to overcome this distress, as it may lead to empathy fatigue and burn-out if ignored.
‘Termination of life support’ is important clinically. It helps end-of-life patients who have expressed their wishes to avoid any aggressive interventions performed in case their clinical condition deteriorates. It prevents care that is futile and may involve invasive interventions with potential adverse impact on their quality of life, without adding a significant survival benefit. It also provides the grieving family comfort to witness a pain-free and peaceful death of their loved one.
Enhancing Healthcare Team Outcomes
A multidisciplinary approach is needed for an effective ‘termination of life support.’ Compassionate attitude, empathetic communication skills, and the use of support staff to help the family overcome social and financial issues. All of these steps help provide effective care. Palliative care has been shown to improve the quality of life for the patient and sometimes also improve the life span of the patient. Termination of life support with an emphasis on good pain and symptom control helps the patient die peacefully. It also helps the grieving family members overcome their distress and bereavement.
Death is the ultimate reality for all of us. While modern medicine has been able to delay it to an extent, it is helpful to make the process of dying 'pain-free' for the patient and less stressful to the family in-grief, when death is inevitable. A physician’s duty goes beyond the immediate care of the patient and involves taking care of the family before and after bereavement. A good life is aspired by all, but providing access to a 'good death' to all is also important, when possible.