Management

The Twilight Hours: The Role of the Intensivist

As healthcare professionals, it is imperative that we learn to respect the emotions and personal feelings both of patients and their families and explore with them any fears associated with the time of death

"In dying patients, a poorly understood phenomenon is the experience of hallucinations that include loved ones who have already died" - Amit Varma Director Critical Care Medicine Fortis Escorts Hospitals

Despite advances in the treatment of terminal illnesses such as cancer amongst others, many people continue to die from these diseases. This summary is intended to address care during the last days to last few hours of life of a patient, from the perspective of an Intensivist who is frequently grappling with not just the futility of the outcome, but also emotions of the family. The medical curriculum is curiously silent on this aspect of palliative care and making patients comfortable is an afterthought.

Adding 'Quality' to Life

Although, greatly feared by our 'death-denying society', end-of-life can be a time of great personal growth for patients and their families. This growth depends on thoughtful discussions and careful decision-making about advance care planning, optimally beginning soon after diagnosis and continuing throughout the course of the disease. Planning includes establishing goals of care, clarifying acceptable treatment options and determining where a patient wishes to spend the final days of life, including discussions regarding palliative care and hospice. When these discussions do not take place and plans are not made, the final hours may be filled with suffering and distress. Below are discussed some approaches that will help in passing the last few hours or days of a patients life both for patients and their families. Palliative care is an approach that improves the quality of life for patients and their families facing life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other physical, psycho-social, and spiritual problems.

On similar lines is a hospice which is a specialised form of inter-disciplinary healthcare that alleviates physical, emotional, social, and spiritual discomfort during the last phase of life. Pain management and symptom management are paramount, along with bereavement and volunteer components. Hospice provides palliative care, with which it is frequently confused. However, the focus of hospice is on patients with life-limiting, progressive disease (usually with a prognosis of no more than six months, if the disease were to take its natural course).

Pain during Final Hours of Life

Many patients fear uncontrolled pain during the final hours of life, while others (including family members and some healthcare professionals) express concern that opioid use may hasten death. Experience suggests that most patients can obtain pain relief during the final hours of life and that very high doses of opioids are rarely indicated. Several studies refute the fear of hastened death associated with opioid use. In several surveys of high-dose opioid use in hospice and palliative care settings, no relationship between opioid dose and survival was found.

Because consciousness may diminish during this time and swallowing becomes difficult, alternatives to the oral route of opioid delivery are indicated. In a study of cancer patients at four weeks, one week and 24 hours before death, the oral route of opioid administration was continued in 62 per cent, 43 per cent and 20 per cent of patients, respectively. As patients approached death, the use of intermittent subcutaneous injections and intravenous or subcutaneous infusions increased. Both intravenous and subcutaneous routes are effective in delivering opioids and other agents in the inpatient or home setting. For patients who do not have a pre-existing access port or catheter, intermittent or continuous subcutaneous administration provides a painless and effective route of delivery. While myoclonic jerking can occur at any time during opioid therapy, it is seen more frequently at end-of-life.

Common Symptoms

Dyspnea, described as shortness of breath, is a common symptom for people with cancer during the final days or weeks of life. Fatigue at the end-of-life is multidimensional, and its underlying pathophysiology is poorly understood. Factors that may contribute to fatigue include physical changes, psychological dynamics, and adverse effects associated with the treatment of the disease or associated symptoms. Stimulant medications, along with energy conservation, may be warranted. In some patients, chronic coughing at the end-of-life may contribute to suffering. Chronic cough can cause pain, interfere with sleep, aggravate dyspnea, and worsen fatigue. 'Death rattle', occurs when saliva and other fluids accumulate in the oropharynx and upper airways in a patient who is too weak to clear the throat. Rattle does not appear to be painful for the patient, but the association of this symptom with impending death often creates fear and anxiety for those at the bedside. Rattle is an indicator of impending death, with an incidence of approximately 50 per cent among people who are actively dying. There is some evidence that the incidence of rattle can be greatly reduced by avoiding the tendency to over-hydrate patients at the end-of-life. (See Table).

Delirium

Delirium is common during the final days of life. There are two general presentations of delirium- hyperactive and hypoactive. Care of the patient with delirium can include- stopping unnecessary medications, reversing metabolic abnormalities (if consistent with the goals of care), treating the symptoms of delirium, and providing a safe environment. In dying patients, a poorly understood phenomenon that appears to be distinct from delirium is the experience of auditory and/ or visual hallucinations that include loved ones who have already died. Although patients may sometimes find these hallucinations comforting, fear of being labeled confused may prevent patients from sharing their experiences with healthcare professionals.

Fever

Terminally ill patients experience a high incidence of fever and infections. Determining the cause of fever (e.g., infection, tumor, or another cause) and deciding which symptoms from suspected infections might respond to various antimicrobial interventions can be difficult clinical judgments, particularly in patients who have multiple active medical problems and for whom the goal of treatment is symptom control.

Nonpharmacologic interventions include repositioning the patient by elevating the head of the bed or turning the patient to either side. Reducing or eliminating additional fluids and feedings alleviates additional fluid accumulation in the body. Family members may request suctioning, but this can be traumatic and cause bleeding or stimulate the gag reflex. If truly indicated, suctioning should not be done beyond the oral cavity.

Nutritional Supplementation

Providing nutrition to patients at the end-of-life is a very complex and individualised decision. Ideally, the options for nutrition support for end-of-life care should be discussed in advance, and information on all nutritional choices and their consequences should be provided to the patient and family. Considerations of financial cost, burden to patient and family of additional hospitalisations and medical procedures, and all potential complications must be weighed against any potential benefit derived from artificial nutrition support. The goal of end-of-life care is to relieve suffering and alleviate distressing symptoms. The patient's needs and desires must be the focus, with their best interests being the guide for decision making, influenced by religious, ethical and compassionate issues.

Resuscitation

Broadly defined, resuscitation includes all interventions that provide cardiovascular, respiratory, and metabolic support necessary to maintain and sustain life of a dying patient. Narrowly defined, a Do Not Resuscitate (DNR) order instructs healthcare providers that, in the event of cardio-pulmonary arrest, Cardio-Pulmonary Resuscitation (CPR, including chest compressions and/ or ventilations) should not be performed and that natural death be allowed to proceed. It is advisable for a patient who has clear thoughts about these issues to initiate conversations with the healthcare team (or appointed healthcare agents in the outpatient setting) and to have forms completed as early as possible (i.e., before hospital admission), before the capacity to make such decisions is lost. Although patients in end-stage disease and their families are often uncomfortable bringing up the issues surrounding DNR orders, physicians and nurses can tactfully and respectfully address these issues appropriately and in a timely fashion. There is a continued debate around the exact legality of DNR in India and it would be prudent to formulate an institutional consensus prior to implementation.

Ventilator Withdrawal

When ventilatory support appears to be medically futile or is no longer consistent with the patient's (or family's or proxy's) goals of care, ventilator withdrawal to allow death may take place. Extensive discussions must first take place with patients (if they are able) and family members to help them understand the rationale for and process of withdrawal. Two methods of withdrawal have been described- immediate extubation and terminal weaning. Immediate extubation includes providing parenteral opioids for analgesia and sedating agents such as midazolam, suctioning to remove excess secretions, setting the ventilator to 'no assist' and turning off all alarms, and deflating the cuff and removing the endotracheal tube. Terminal withdrawal entails a more gradual process. Ventilator rate, oxygen levels and positive end-expiratory pressure are decreased gradually over a period of 30 minutes to a few hours. This method has no legal sanctity in India. Regardless of the technique employed, the patient and setting must be prepared. Monitors and alarms should be turned off, and life-prolonging interventions such as antibiotics and transfusions should be discontinued. Family members should be given sufficient time to make preparations, including making arrangements for the presence of all loved ones who wish to be in attendance. They should be given information on what to expect during the process. Some may elect to remain out of the room during extubation. Chaplains or social workers may be called to provide support to the family.

Conclusion

This article is intended towards understanding the meaning of losing a loved one. It is easier said than done, and despite all efforts it may not be at all easy to deal with. But as healthcare professionals it is imperative that we learn to respect the emotions and personal feelings both of patients and their families and explore with them any fears associated with the time of death and any cultural or religious rituals that may be important to them. This is the least we can do, after all our best efforts fail to save a patient for reasons beyond our control.

When death occurs, expressions of grief by family is natural and if left unattended, loss, grief, and bereavement can become complicated, leading to prolonged and significant distress for either family members or clinicians. Thus care in the last few critical hours is a practice that is as important and critical as care in the initial days of the disease, for it greatly impacts both the family of the patient and the clinicians too.

amit.varma@fortishealthcare.com