Care of the Dying: a Buddhist Doctor’s Perspective
Dear Kian Seng,
Thanks for inviting me to pen some thoughts regarding the counseling that I give for terminally ill people. Most of the ones that I do counsel are usually close friends and Dhamma siblings, so I will stick to what is a typical scenario and with the religious aspects that I am familiar with. The Dying process and Spiritual Faith is closely linked in our country and cultures, so it is important that we have some familiarity with what is common in our country.
Care of the Dying: a Buddhist Doctor’s Perspective
Of all patients who die, only a few (< 10%) die suddenly and unexpectedly.
Most people (> 90%) die after a period of illness, with gradual deterioration.
It is possible to provide smooth passage and comfort for the patient and the relatives and loved ones present.
From the Buddhist viewpoint, death is a natural process reflecting the Impermanence, Unsatisfactoriness and NonSelf nature of all things. It is a door to a new state of Existence, a new Becoming. The practicing Buddhist would have reflected many a times on impermanence and death, and should ideally be already mentally prepared.
Whatever the Spiritual Beliefs of the patient, It is IMPORTANT that we Must respect the religious beliefs and wishes of the dying person. He/she is not a commodity to be fought over the cause of religion at this time. I have seen families split because of such issues in our multi faith nation.
Preparing for the Last Hours of Life
The environment must allow family and friends access to their loved one around the clock. Caregivers must be aware of the patient's status, and the goals of care (and the parents' goals if the patient is a child), advance directives regarding organ donation and use of painkillers, and the proxy for decision making.
While it is possible to give a general idea of how long the patient might live, there is the inherent unpredictability of the actual moment of death. Some because of attachment, may appear to wait for someone to visit, or for an important event such as a birthday, and then die soon afterwards. A few seem to decide to die and do so very quickly.
Our aim is to provide Comfort and it is CRUCIAL that we reassure all patients that with modern medicine, MOST people do not die in agony or pain. This is a COMMON fear that we as doctors must dispell early in the illness. To the loved ones, this is an equally important reassurance.
Weakness increases as the patient approaches the time of death. Continuous pressure on the same area of skin, particularly over bony prominences, will increase the risk of skin ischemia and pain. Providing adequate cushioning on the bed, augmenting it with an air-ripple mattress, will lessen the need for uncomfortable turning.
Patients who are too fatigued to move will require passive movement. To minimize the risk of pressure ulcer formation, turn the patient from side to side every 1 to 1.5 hours and protect areas of bony prominence with hydrocolloid dressings and special supports. Do not use "donut-shaped" pillows as they paradoxically worsen areas of breakdown by compressing blood flow circumferentially around the compromised area.
As the patient approaches death, the need for turning lessens as the risk of skin breakdown becomes less important. Intermittent massage can be comforting and improves circulation.
Decreasing appetite and food intake.
Families may interpret cessation of eating as "starving to death."
Intravenous or tube feeding of patients near death neither improves symptom control nor lengthens life. Anorexia may actually be helpful as the resulting state of ketosis can lead to a sense of well-being and diminish discomfort. We must realize that food pushed upon the unwilling patient may cause problems such as aspiration.
Decreasing fluid intake and dehydration.
Most dying patients stop drinking. This may heighten onlookers' distress as they worry that the dehydrated patient will suffer, particularly if he or she becomes thirsty. Again dehydration in the last hours of living does not cause distress and may stimulate endorphin release that promotes the patient's sense of well-being.
Intravenous fluids are sometimes considered when the goal is to reverse delirium. Excess fluids can lead to fluid overload with consequent peripheral or pulmonary edema, worsened breathlessness, cough, and orotracheobronchial secretions, particularly if there is significant hypoalbuminemia.
Mouth and Eye care.
Moisten and clean oral mucosa to minimize the sense of thirst and avoid bad odors and painful cracking. Coat the lips and anterior nasal mucosa with a thin layer of petroleum jelly to reduce evaporation. If eyelids are not closed, moisten conjunctiva with artificial tears or physiologic saline solution to avoid painful dry eyes.
Heart and renal failure.
As cardiac output falls at the end of life, there will be diminished peripheral blood perfusion. Tachycardia, hypotension, peripheral cooling, peripheral and central cyanosis, and mottling of the skin (livedo reticularis) is expected. Urine output falls as perfusion of the kidneys diminishes. Intravenous fluids will not reverse this circulatory shut down.
A basic question all of us as doctors MUST answer is that in every act that we do, are we prolonging LIFE or merely PROLONGING the dying process?
Two Roads to Death
1. Decreasing Level of Consciousness- the Easy Road
The majority of patients traverse the "usual road to death." They experience increasing drowsiness, sleep most of the time, and eventually become unarousable. For the Buddhists, we hope that we have the Kammic causes and conditions to have Mindfulness till the last moment of consciousness, and to pass on in calmness and peace, and with a wholesome state of Mind.
Communication with the unconscious patient.
It is desirable to maintain such a Mindful and calm state of mind for both the patient and the family members. While the patient is conscious, inviting a Venerable to enable the patient to take refuge and to offer requisites creates wholesome thoughts. The Venerable can also give a Dhamma lesson suitable to the patient’s level of understanding. Chanting of familiar suttas is assuring and calms the minds of all involved. However we must keep the duration appropriate so as not to exhaust the patient. It is also important to remind the patient of his or her past wholesome acts of charity, offerings, pilgrimage, etc.
Loud upsetting sounds like wailing and shouting should be avoided as it makes it difficult for the dying person to maintain a calm Mindful state.
This applies equally to patients of any faith as the presence of a familiar Pastor, Priest, Iman or Nun will be reassuring and a pillar of Positive Thoughts.
Families frequently find their decreasing ability to communicate distressing.
While we do not know whether unconscious patients can actually hear, data from the operating room and "near death" experiences suggest that their awareness may be greater than their ability to respond. It is prudent to presume that the unconscious patient hears everything.
We should talk to the patient as if he or she were conscious. One continues to reassure the unconscious dying patient of one’s love, reminding him of his past good acts, reciting familiar chants/suttas, and even continuing with acts like taking refuge and sharing of merits. This applies as well to the rituals of other faiths with which the patient is familiar with.
Surround the dying with the people, religious objects and chants that he or she would appreciate as wholesome. Encourage family members to say the wholesome things that they need to say early and in a calm and Mindful manner.
At times, a patient may be waiting for permission to die.
Family members can give the patient permission to "let go". The family or visiting Venerable, might say words like:
"I know that you are dying; please do so when you are ready. Let go, we are all well and capable of taking care of ourselves"
"I love you. I will miss you. I will never forget you. Please do what you need to do when you are ready."
"Mommy and Daddy love you. We will miss you, but we will be okay."
2. Terminal delirium- the Difficult Road
An agitated delirium may be the first sign to herald the "difficult road to death." It presents as confusion, restlessness, and/or agitation, with or without day-night reversal. To the family, agitated terminal delirium can be very upsetting. The doctor aims to relieve the dying of distress and pain.
It is important that onlookers understand that what the patient experiences may be very different from what they see.
The focus is on the management of the symptoms of terminal delirium in order to settle the patient and the family. When moaning, groaning, and grimacing accompany the agitation and restlessness, these symptoms are frequently misinterpreted as pain.
While many people fear that pain will suddenly increase as the patient dies, there is no evidence to suggest that this occurs. A trial of opioid may be necessary to judge whether pain is driving the observed behaviour.
Managing Confusion, Restlessness or Pain:
Opioids are very useful, but keep in mind that opioids may accumulate and add to delirium when renal clearance is poor. If opioids does not relieve the agitation or makes the delirium worse, then alternative therapies directed at suppressing the symptoms is needed.
Benzodiazepines are used to treat terminal delirium as they are anxiolytics, amnestics, skeletal muscle relaxants, and antiepileptics.
Lorazepam, 1-2 mg tablet dissolved in 0.5-1.0 mL of water and administered against the buccal mucosa as needed will settle most patients with 2-10 mg/24 hours.
Midazolam 1-5 mg/hour subcutaneously or intravenously by continuous infusion, may be a rapidly effective alternative.
Benzodiazepines may paradoxically excite some patients. These patients require neuroleptic medications to control their delirium:
Breaths may become very shallow and frequent with a diminishing tidal volume.
Families frequently find changes in breathing patterns distressing as they fear that the comatose patient will experience a sense of suffocation. Knowledge that the unresponsive patient may not be experiencing breathlessness or "suffocating," and may not benefit from oxygen (which may actually prolong the dying process) can be comforting.
Low doses of opioids or benzodiazepines are appropriate to manage any perception of breathlessness.
Some are concerned that the use of opioids or benzodiazepines for symptom control near the end of life will hasten death. There is a difference in the effects of an intended action (alleviating suffering) and the unintended possible consequences of the same action (hastening death).
To be acceptable;
The treatment proposed must bring relief of intolerable symptoms;
The clinician must intend only the good effect (relieving pain or symptoms), although some untoward effects might be foreseen;
The good result (relief of suffering) must outweigh the untoward outcome (hastening death).
Loss of ability to swallow.
As the patient loses consciousness secretions from the tracheobronchial tree and saliva may lead to gurgling sounds with each breath. Some have called this the "death rattle" (a term that should be avoided, as it is frequently disconcerting to families). Once the patient is unable to swallow, cease oral intake. There is risk of aspiration.
Anti Histamines/Scopolamine will effectively reduce the production of saliva and other secretions. Scopolamine transdermal patches every 72 hours is convenient.
Anecdotal evidence suggests that the earlier treatment is initiated, the better it works, as larger amounts of secretions are more difficult to eliminate. However, premature use in the patient who is still alert may lead to unacceptable drying of oral and pharyngeal mucosa. While atropine may be equally effective, it has an increased risk of producing undesired cardiac and/or central nervous system excitation.
If excessive fluid accumulates in the back of the throat and upper airways, it needs to be cleared by turning the patient onto one side or into a semi prone position to reduce gurgling.
Oropharyngeal suctioning is not recommended as it is frequently ineffective and traumatic, as fluids are beyond the reach of the catheter, and stimulate an otherwise peaceful patient.
Loss of sphincter control.
Incontinence of urine and/or stool can be distressing to patients and family members. Attention needs to be paid to cleaning and skin care. A urinary catheter may minimize the need for frequent changing and cleaning, and prevents skin breakdown. However, if urine flow is minimal it can be managed with absorbent pads.
Administration of Medication
As patients approach death, we continue only those medications needed to manage pain, breathlessness, excess secretions, and terminal delirium. We use the least invasive route of administration: the buccal mucosa or oral routes first, the subcutaneous or intravenous routes only if necessary, and the intramuscular route last. Rectal administration can be considered and the transdermal route eg Fentanyl patches is another alternative.
Knowledge of opioid pharmacology.
The liver conjugates codeine, morphine and hydromorphone into glucuronides. Some of their metabolites remain active as analgesics until they are renally cleared, particularly morphine. As dying patients experience diminished hepatic function and renal perfusion, routine dosing or continuous infusions of morphine may lead to increased serum concentrations of active metabolites, toxicity, and an increased risk of terminal delirium. To minimize this risk, discontinue routine dosing or continuous infusions of morphine when urine output stop. Instead titrate morphine rescue doses to manage expressions suggestive of pain.
Signs That Death Has Occurred
The heart stops beating
Pupils become fixed and dilated
Body temperature drops
Urine and stool may be released
Eyes may remain open
The jaw can fall open
Observers may hear the trickling of fluids internally, even after death
When death occurs, the focus shifts from the dead to the family.
The time spent with the body will help people deal with acute grief. For the Buddhists we need to remain Calm and Mindful, reflecting on the Impermanence of life and to say our good-byes mindfully. Emotional outbursts are inappropriate. We can continue with the chanting of suttas and to share merits with the departed.
Realize that there is NO fear when a good person dies.
I conclude with 2 letters:
You will, I hope, be happy to learn that I died to-day.
That may at first sound rather strange and I should explain two points. Firstly, this is of course not a letter sent from the other side of the grave; it is written half-way through my eightieth year to be sent out after my death. I may live a long time yet, though I do have a slight, very slight, preference for dying whilst I'm still comparatively young and with a mind still active.
Secondly, unless you believe (and, frankly, I do not think that anybody at all believes this wholeheartedly and without some reservations) that death ends all, you must believe that eventually a man's deeds catch up with him. Christianity, Islam, Hinduism, Judaism, Buddhism, all religions teach this in one form or another.
If you also think so, you should be very sorry when a bad man dies and happy when you hear of the death of a mature man you regard as comparatively good.
In my long and varied career in this life and the infinitely longer and more varied career in countless lives in 'the long road of the past', I've done very many stupid and unskillful things and for some I have paid in full. I feel I'm fairly well fitted to pay the balance without flinching. Oh, I am, as yet, by no means a saint, but please do not insult me by grieving at the news of my death. I face the future with confidence and tranquility. So may it be with you.
For those who know what I consider I know, it may be stressed that I use, as I have to, the word 'death' in its conventional sense. The continuum persists until and unless one transcends ego completely, to something so marvelous, so splendid that no words, made by a multiplicity of egos, can be used to describe it. This ever-changing continuum is a force of character (each makes and is making his own) which carries memory, (a memory sometimes deeply buried) but the continuum is not, in this case, 'David Maurice'.
It is, as it will be with you: ‘Not the same and not another.' At the time of writing it has not as yet been transcended. If it has been by the time you receive this letter, then this is a final farewell. If it hasn't, then
‘Hereafter, in a better world than this,
I shall desire more love and knowledge of you.'
All this in more detail in my book which, if you have not had a copy as yet, one is being sent to you.
If you are one of my very close friends you will find this letter rather 'formal'. It is necessarily so since it is to go to so many. I regret that in the circumstances it is not possible to acknowledge all friendships individually!
May you be happy and tranquil.
Dear Mr. Maurice,
Your letter was passed on to me on 26th October, 1981 about a month after you died and I didn't learn of your death until a few days after that.
I must confess I have neither the honour nor the privilege of knowing you in this lifetime, but after going through the contents of you letter and knowing the tone and mood in which it was written, I cannot but come to the conclusion that we must have been good friends before — during one of our previous lives. Because of this, a reply must be penned, though you have given no address.
I am happy to say that you have lived up to a ripe, old age and that you have enjoyed a long and varied career in this life. Yes, I believe, as you do, that a man's deeds will catch up with him, that life is governed by the inexorable, fixed laws of karma......
‘That which ye sow, ye reap. See yonder fields!
The sesamum was sesamum, the corn
Was corn. The Silence and the Darkness knew!
So is a man's fate born.
He cometh, reaper of the things he sowed......'
That you say you can 'face the future with confidence and tranquility' shows that you have led a useful and virtuous life in this life. That you say you have 'paid in full... in the infinitely longer and more varied career in countless lives' in the past and are 'well-fitted to pay the balance without flinching' indicates that you are well on the way to attaining Nibbana. For both these two achievements, I am happy for you.
Most Westerners fear death, but you have conquered it, Maurice. To be sure, death is not to be feared. For what is death but the seed of a rebirth….
..I hope sincerely that your last thoughts were pure and noble so that the departing aggregate of energies have resulted in a higher birth for you.
Farewell! We shall meet, countless aeons of time from now, in the 'clear light of the void' where consciousness has no limitations whatsoever. That certainly is a better world than this.
Yours in the Dhamma,