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Ethical Principles in End-of-Life Care

81

 

Subhash Todi and Rajesh Chawla

 

A 70-year-old male patient was admitted with massive intracerebral bleed to the ICU for 6 days. He was on a ventilatory support, with a Glasgow Coma Score of 6. According to the treating physician and neurologist, his survival chances were poor, and even if he survived, he would be fully dependent functionally. His eldest son requested withdrawal of the ventilatory support to provide comfort measures only and transfer out of the ICU.

Optimizing comfort care for critically ill patients during the terminal stage according to patient and family’s wishes is an obligation for all critical care physicians. With increasing complexity of organ support, increasing age, and multiple comorbidities of critically ill patients, prolonged life-sustaining treatment is very commonly observed in modern ICU care. Limitations of such treatment in selected individuals need to be realized early, and clinical skills need to be developed for managing end-of-life (EOL) issues in these patients.

Step 1: Identify situations when EOL support needs to be initiated

Identifying these situations needs expertise and experience. The following checklist, though not exhaustive, should help the physician to recognize when to start discussions on EOL issues:

Advanced age coupled with a poor premorbid state due to chronic debilitating diseases, for example, advanced chronic obstructive pulmonary disease requiring

S. Todi, M.D., M.R.C.P. (*)

Critical Care & Emergency, A.M.R.I. Hospital, Kolkata, India e-mail: drsubhashtodi@gmail.com

R. Chawla, M.D., F.C.C.M.

Department of Respiratory, Critical Care & Sleep Medicine, Indraprastha Apollo Hospitals, New Delhi, India

e-mail: drchawla@hotmail.com

R. Chawla and S. Todi (eds.), ICU Protocols: A stepwise approach,

655

DOI 10.1007/978-81-322-0535-7_81, © Springer India 2012

 

656

S. Todi and R. Chawla

 

 

home oxygen and/or bi-level pressure support or severe impairment of quality of life, advanced interstitial lung disease on oxygen therapy with failed medical treatment, chronic renal failure requiring long-term dialysis, chronic liver disease, and advanced congestive heart failure.

Catastrophic illnesses with multiple organ dysfunctions unresponsive to a reasonable period of aggressive treatment.

Prolonged coma (in the absence of brain death) due to acute nonreversible causes or chronic vegetative state.

Incurable chronic severe neurological states rendering meaningful life unlikely, for example, progressive dementia or quadriplegia with ventilator dependency.

Progressive metastatic cancer where treatment has failed or the patient refuses treatment.

Post-cardiorespiratory arrest, situations with non-restoration of comprehension after a few days.

Comparable clinical situations coupled with a physician’s prediction of low probability of survival.

Step 2: Discuss with other team members including nurses regarding EOL decision

Ensure that all members of health care team are on board and agree on initiating this discussion.

The overall responsibility for the decision rests with the attending physician/ intensivist of the patient, who must ensure that all members of the caregiver team including the medical and nursing staff follow the same approach.

Step 3: Identify a surrogate decision maker

Majority of patients in the ICU are not competent to participate in EOL discussion. In these circumstances, the following approaches may be adopted:

Living will or advanced directive: A duly processed legal document, which states patient’s explicit wishes while he/she was campus mentis (in full sense), should be honored. This situation is met very rarely.

Durable power of attorney: The patient has legally designated a surrogate to take decisions on his/her behalf during period of incompetency.

Surrogate decision maker: This means spouse, children, parents, siblings, the next of kin who is available, or even a trusted friend. Existing laws for hierarchy of surrogates for EOL decision making, if present, should be applied in these situations.

Step 4: Understand ethical principles about withdrawing life-support measures in the ICU

Autonomy

Right to self-determination: The properly informed patient has a right to choose the manner of his/her treatment.

Competency: The patient should be competent to make decisions and choices. This competency is assessed clinically by the physician and a psychiatrist if necessary.

81 Ethical Principles in End-of-Life Care

657

 

 

Beneficence

It means doing what is (or judged to be) in patient’s best interest.

In this context, the physician’s expanded goals include facilitating (neither hastening nor delaying) the natural dying process, avoiding or reducing the sufferings of the patient and the family, providing emotional support, and protecting the family from undue financial loss.

Non-maleficence

It means doing no harm and avoiding the imposition of unnecessary or unacceptable burdens on the patient and the family.

Distributive justice

It means that patients in similar circumstances should receive same care.

Step 5: Initiate discussion on EOL with the surrogate decision maker

The intensivist should initiate this process.

This should be done in an empathic manner, in an unhurried way, with due time given for discussion. The environment should preferably be a quiet room, ensuring privacy and without any interim disturbance.

A senior nurse or other members of health care team including family physician may be present during discussion.

Other senior family members apart from the surrogate can also participate in the process, though total number should be restricted.

Discussions should be carried out in a language and in terms that the family can understand.

His/her present understanding of the disease process, expectations, and areas of uncertainties need to be identified. Attentive listening during this process is the key in reaching a consensus.

The present clinical situation needs to be explained in simple nonclinical terms.

The diagnosis, prognosis, and the range of therapeutic interventions available, including their risks, benefits, costs, and consequences, as well as the option of no therapy, should be explained clearly.

As accurate a prognosis as is possible should be given, clarifying that uncertainty is inherent in the treatment of critical illness.

Family’s wish for a second opinion needs to be clarified and if requested should be complied with.

The possibility of death should be discussed along with the medical and palliative treatment options.

Any previously stated terminal care wishes or preferences directly or indirectly expressed by the patient should be enquired.

The discussions should include the relevant economical, ethical, and legal issues.

The family should be counseled that withdrawal of support does not mean withdrawal of care, and all measures will be taken to ensure that the patient is free of pain and discomfort during EOL care.

It should be made clear to the family that the decision is not binding and they are at liberty to change their mind if needed later (Fig. 81.1).

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S. Todi and R. Chawla

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Physician’s objective and

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

subjective assessment

 

 

 

 

 

 

 

 

Reassess

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

periodically

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Honest, accurate and early

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

disclosure of prognosis

 

Prognostic uncertainty

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Early offer of palliative treatment options

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

when poor outcome predicted

 

 

 

 

 

 

 

Second opinion

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Consensus through open,

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

early and repeated discussions

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Conferences with

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Implication of options

 

 

 

patient / family

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

unclear to family

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Ensure consistency within

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Support from:

 

 

 

 

 

caregiver team

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Other team members

 

 

 

 

 

 

 

 

 

 

 

 

Institutional

 

 

 

 

 

 

 

 

 

 

 

 

Nurse

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Ethics Board

 

 

 

Family physician

 

 

Transparency and accountability

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

through accurate documentation

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Pending conflict resolution

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

continue full support

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Time

 

Institutional Policy

 

 

Withdrawal upon sustained request

 

 

 

 

 

 

 

Second opinion

 

 

Legal advice

 

 

 

 

 

and with written consent

 

 

 

 

 

 

independent medical panel

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Psychologist / Social

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

worker

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Priest / Religious guru

 

 

 

 

 

Effective and compassionate care to

 

 

 

 

 

 

 

 

 

 

 

Family elder involvement

 

 

 

 

patient appropriate support to family

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Easier visitation / access

 

 

 

 

Postdischarge

 

Stop diagnostic tests

Bereavement support

Stop non-palliative therapy

Spiritual environment

Fig. 81.1 Pathway to end-of-life decision making

Step 6: Hold multiple counseling sessions

As EOL decisions are very sensitive, these should not be taken in haste. The family should be given adequate time and opportunity to ask questions and to express their views and emotions and to come to term with the situation and make an informed decision.

There should be multiple counseling sessions of adequate duration.

Pending consensus decisions or in the event of conflicts between the physician’s approach and the patient’s/family’s wishes, all existing supportive interventions should continue.

81 Ethical Principles in End-of-Life Care

659

 

 

Step 7: Reach a consensus and discuss modalities of palliative care

If the family consistently desires that life support should be withdrawn and when the treating physician also considers aggressive treatment non-beneficial, it is ethically justifiable to consider withdrawal of life support within the limits of existing laws of the country.

The physician should explicitly communicate the available modalities of limiting life-sustaining interventions as follows:

Do not intubate/resuscitate (DNI/DNR)

Aggressive ICU management but not including intubation (DNI) or attempts at cardiopulmonary resuscitation (DNR)

Do not escalate

Not to escalate some or all existing life-support modalities (intubation, inotropes, vasopressors, mechanical ventilation, dialysis, antibiotics, intravenous fluids, enteral or parenteral nutrition) in case of clinical deterioration with the understanding that the patient will probably die from the underlying condition.

Withdrawal of life support

All or specific life-support systems such as dialysis or ventilators may be withdrawn.

Decision not to institute new life-support treatment.

Ethically, there is no difference between withholding and withdrawing lifesupport therapy.

Step 8: Document discussion in case notes

The proceedings of the counseling sessions, the decision-making process, name of health care members and family members present during discussion, and the final decision should be clearly documented in the case records, to ensure transparency and to avoid future misunderstandings.

Details of the communications between the medical team and the family should be documented accurately and completely.

The signature of a family representative is not a mandatory requirement but may be kept optional.

Step 9: Institute palliative care

Ensure proper sedation and analgesia (e.g., midazolam/fentanyl), preferably as an infusion. Give proper dose to ensure comfort and analgesia. Avoid excessive doses leading to respiratory depression or hypotension. Document doses and intention of palliation in the case notes.

Neuromuscular blockers should be stopped. Ventilators may be disconnected, and the patient may be left on T piece for suctioning or extubated if family desires.

Family members should be allowed at the bedside and given adequate time to spend with the patient. Monitors may be switched off, and blood draws should be stopped to avoid distraction.

The patient may be shifted out of the ICU if the family wishes and if permitted within the laws of the country.

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