Appreciating the preciousness of human life, based on the understanding of one's body constantly changing, ageing, moving toward death since birth and the uncertainty of life helps us appreciate life and prepare for death. It is natural for one's body to decay especially when accelerated by disease processes. In the final stage when life-sustaining systems begin to shut down, physical, mental, emotional and spiritual changes may occur over weeks, days or hours. Each person's experience is unique, but there are some general similarities.
The following is a very simple account of the normal changes that may occur in the final stage of living, commonly called "dying", with some suggested ways of caring. It is intended to help the dying and their loved ones to understand and be prepared for these changes, in order to provide appropriate safe support and comfort holistically.
Physical Weakness / Lack of Energy / Loss of Interest in Everyday Things
As the body's systems weaken less oxygen is available to the muscles, the life force weakens, and more effort is needed to complete everyday tasks and one may become embarrassed, discouraged, ambivalent, depressed, irritable and/or just naturally become more interested in matters that seem more important: matters of the mind, heart and spirit. This is often a time of self-examination, of questioning, of looking for the meaning of life.
Caregivers can best help by assisting the person with physical tasks, while being sensitive to their feelings, maintaining their dignity and attending to their comfort as much as possible, especially with regard to symptom control and protection from injury. Love and humour can take the tension away from a stressful situation. Laughter opens the heart and can free one to see past appearances and circumstances, leaving the burden of self and entering into a instant oneness with another, that is blissfully rewarding. Psychological and spiritual support means being along side as a good friend: patient, non-judgmental, compassionate, allowing the person's own wisdom to evolve. When regrets appear, see them as lessons learned, encourage memories of meaningful events and practice rejoicing, by seeing the benefits of the kind actions of one's life, allowing whatever faith, hope and love the person has, to exist and develop freely.
Withdrawal from Family and Friends / Increased Sleepiness / Coma
Neither family, friends nor wealth can be taken with us when we leave this world. Much of the packing it all up and leaving it behind is a solo job and one needs time and privacy to do it. Visitors can be very exhausting and the person may feel they have to entertain their guests even if they can't get up out of bed. Too many visitors one day will often result in the person being more tired and/or more withdrawn the next day. Sometimes the person may sleep more, be difficult to arouse or uncommunicative. This may be due to disease processes, medication, or the person's desire to withdraw from social contact. Simply being a loving presence near the person, holding their hand, sending loving thoughts, silently praying, meditating, just being there for them provides a comforting, safe and peaceful atmosphere that facilitates the person's inner work. The caregiver should try to respect the person's wishes and be aware of what personal desires come up in their own mind and how these can be addressed without disturbing the mind of the dying. Be careful of what you say over their body while the person is asleep or unconscious, they may hear you and it could upset them. Many people who have recovered from a coma (a state where there is no response to voice or touch stimuli, though eyes may still be open) have reported being aware of what others said and even thought in their presence.
Random jerks or twitches can be due to dreams or nightmares, you can reassure them with your kind tone of voice and/or a gentle touch on their hand or arm. The dying are very sensitive to what is communicated by the caregiver's body, speech and mind and the caregiver can become more aware of reactions and messages from the person by watching and listening. The eyes, facial expressions, and breathing changes often indicate what the person is feeling or thinking. The reason why communication is possible on this level and why you can trust your deepest intuition is because the basic nature of every being is pure and knowing, as Christians may say God-like or as Buddhists say having all pervasive, indestructible wisdom nature. Awake or asleep this is always present and available if one is relaxed, open and receptive, but it is much more familiar and easy for those who are habituated to this awareness through meditation practice. The depth of one's spiritual practice is communicated by its own power and has remarkable benefits for others. Stripped of dogma and doctrine, reputation and position, sex, age, and relationship, leaving one's 'self' to enter nakedly with no agenda, into unity with the person, even for a brief moment liberates both parties from the bondage of duality temporally and is profoundly comforting.
Loss of Appetite
Food is a fuel that helps sustain life. As the digestive system gets weaker, food may become more of a discomfort than an enjoyment, some medications may change the tastes of food, and finally the energy required to process the food becomes greater than the energy derived it. Any of these may produce a loss of appetite. Eating habits change. The person may become overwhelmed by a "normal size" meal. He/she may take a few mouthfuls of their "favourite" meal and feel full. Small attractively presented meals may tempt them. But consider who is getting the satisfaction - family and friends who want to nourish their loved one, so that the person can get better and live longer? It's often the hardest thing for the family to face; but the refusal to feed the body is not a refusal for nourishment. It is a sign that priorities have changed to nourishing the soul/spirit/mind. Forcing the person to eat or making them feel guilty if they don't, only isolates and distances them even further. The person approaching death needs to know that it is OK not to eat. Respect and acceptance brings people closer together which comforts the dying person and the caregiver too.
Difficulty Swallowing
As the swallowing reflex weakens, swallowing becomes difficult. It may become frightening for the person to attempt to eat or drink or the person may be slipping into unconsciousness. It is best to offer very small amounts (half a teaspoon) and observe the throat to see if swallowing has taken place. Tolerance of food generally progresses from solid to soft to liquids (soups and dietary supplements), to ice chips and spooned or sucked water. It is safer to feed a person who is upright, but if the person is used to eating in an incumbent position, it is generally easier to swallow if their head is kept straight, not turned to the side. The sucking reflex seems to last a long time as the caregiver will see when attempting to clean the person's mouth or teeth. Mouth care is important for comfort and dignity. Medications can be crushed and capsules opened and mixed with jam, jelly, yoghurt or like foods. Do not crush time-release or long acting medications. Discuss with your nurse or doctor any problems with medications; alternative medications or modes of delivery are available. Do not give food or liquids to a person who is unconscious. It may cause the person to choke or to inhale the foreign matter.
Confusion
The level of awareness and cognition can change frequently and unexpectedly, due to many causes (i.e. disease processes, tiredness, medication). When a person becomes confused, there can be a decrease of oxygen to the brain and they may not recognise familiar people, places, the time of day or year etc. or they may hear voices or see visions. Do not negate what they say or argue with them. This is their personal reality, which can be a pleasant comforting experience for the person and could also be a sign that the person's mind is peaceful or joyful with happy expectation. But if their experience upsets or disturbs them, gently touch or stroke their arm or hold their hand and speak calmly with a soft reassuring voice and remind them of who you are, where they are, what day it is etc. Aromatherapy and their favourite music or chanting of their faith, is also helpful.
Restlessness
A person may become restlessness and make repetitive motions like picking at the bed linen, their clothing or the air. This can be a sign of less oxygen available in the brain or of being distressed due to having pain, nausea, constipation or a full bladder or could be due to being confused or anxious about something. Or if the person is throwing or kicking bed covers off even in a cool room, it can be the first stage of the death process when one feels like being buried under a great weight. Before rushing in to do something about it, be calm and still. Observe and listen with your mind and heart to what the person could need. Do not try to interfere with their restless motions but protect from injury and check out the physical side first. Pain doesn't conform to schedules. After the physical problems are controlled, by using a soothing voice, remind them of their goodness and virtues, along with music, aromatherapy or reciting the person's favourite spiritual practice may help calm and reassure them. Likewise one can distract the person's mind away from the disturbing thought or nightmare even if the person is unconscious by verbally describing a favourite place or special experience. And even simply by giving the person assurance that it is OK 'to let go', could address the real problem that the person is unable to articulate.
Restlessness can also be a sign of spiritual crisis which needs urgent attention, not waiting for the minister or religious person although they could of course be called to attend, but there is no time to lose, one needs to know what the dying person believes or what prayers or meditations practices that they do and also to remind them of the positive things that they have done in their life, remind them of their faith, their heaven or Amitabha pure land, recite these prayers etc for them and whether the person has religious belief or no faith, he or she can be encouraged to generate universal love and to feel and be that love (forgiving oneself and all others and to generate love and good-will for all without exception). Universal Love replaces fear with calm and confidence.
Elimination
As the person gets weaker and is no longer able to get out of bed, the muscles that control the bowel and bladder may relax and "incontinence" or involuntary loss of urine or faeces may occur. Often the person will feel embarrassed and/or may awaken if asleep. Attend to them with dignity and respect and avoid exposing their private parts to others. Its important to keep the skin clean and dry or the skin could develop a rash or open sores and cause more discomfort. Use plastic gloves and soap and water or a disposable skin wipe. Often when a person needs a bowel movement they will get grumpy, irritable or restless. It's a good idea to keep a record of the bowel movements to tell the nurse or doctor. One can't expect a normal daily bowel motion but too many days between eliminations can signal a problem. However, with little food intake there is less reason for a bowel motion.
As the kidneys shut down and the skin takes on more elimination work; the person may experience itching over different parts of their body and also combined with increased sweating from failing thermal regulators it is difficult to provide comfort. Different things work for different people: some like warm bed baths, others cool tepid sponging, or even a cool compress to the forehead and pulse areas can cool down and soothe. Tea tree oil, calendula or lavender oils or other commercial products can give relief, but usually strong perfumes are not tolerated. Change the bed linen if soiled with sweat. This is a good opportunity to give a back rub and reposition the person into a more comfortable position.
Body Temperature and Colour
Mechanisms that control the body's ability to control its temperature will start failing. The skin may sweat and still be very cool or may be hot. The person may kick off the bed linen but be cold to touch. As the heart becomes weaker, circulation fails to adequately reach the hands and feet and they will become cool to touch and the nails maybe bluish, while the arms and legs maybe pale, grey, mottled or purplish. At this time its best to follow the wishes of the dying to keep them comfortable even if it's against reason (like trying to keep a person covered when they keep kicking the blankets off). However it's important to avoid drafts that may cause the body's temperature to fall too fast and cause shivering. Normally, repositioning is advised every 3-5 hrs, but closely monitor whether it becomes too painful to turn or if one position is not tolerated. If possible give extra pain relief before a necessary turn (like when cleaning incontinence). If close to death it is not necessary to turn for circulation. It is only necessary to turn the patient if it helps breathing or provides more comfort. Always observe how well a person settles into a new position and if they don't settle, try another position, or gently return them to the previous position, and/or give pain relief. This is a difficult judgement that can be a great challenge for the caregiver because things are always changing. One position favoured one day will not necessarily be tolerated the next day. A loose sheet from the shoulders to the knees (called a "draw sheet"), under the person's body will help turn or lift the person up the bed (One person on each side of the bed, holding their side of the sheet, rolled up close to the body).
Breathing
If breathing is difficult with or without oxygen being given, sometimes a fan blown over the body to give the sensation of being in fresh air, combined with the mental suggestion of visualising sitting on a beach in the wind or the top of a high hill can give relief. Keeping the head elevated will help breathing, be careful to maintain support of the lower back. A lubricant on the lips will help prevent cracking. And mouth care with mouth swabs can help keep the tongue and mouth moist and less dirty. Although this will not be necessary or may not be tolerated by someone close to death.
A change in breathing pattern is significant during the dying process. When the exhalation (out-breath) is longer than the inhalation (in-breath) this is a sign that the dying process has begun (even weeks before actual death). Next the breathing becomes irregular, although irregular breathing can occur at anytime when someone has a lung condition that causes shortness of breath. Closer to death, the breathing involves the whole rib cage and is fast (up to 30-50 breaths per minute) mostly through the mouth and then may pause for even 10-15 seconds before the next in-breath. This period of no breathing is called "apnoea". This pattern (called Cheyne-Stokes breathing) of shallow quick breaths followed by spaces of no breathing can continue for a few days, hours or minutes before the person actually stops breathing, but rarely does a person improve from this stage.
There may be a rattling noise (often called the "death rattle") at the back of the throat, caused by the accumulation of saliva because the person can no longer swallow. This is often distressing for the helpers but it doesn't seem to bother the dying person. The pool of secretions is too far down the throat to be suctioned. Sometimes turning the person with their head to the side can help drain the secretions from their mouth. Dying people breath better when they are not completely lying on their side, as a health person would sleep. Lying towards the right side is favoured because the heart is not obstructed and according to Buddhist medicine it supports a happy peaceful mind, by blocking the right channel. The Buddha passed away lying on his right side. Buddhist scriptures say to block the right nostril with the ring finger, face resting on the right hand. But if there is a medical reason or the person just can't tolerate the right side, comfort is the priority, to keep the person's mind happy.
Unexpected Alertness and Increased Energy
Often a day or two or even a few hours before death, the person has a surge of energy, wakes up, becomes alert, can sometimes eat or talk and can spend some quality time with loved ones. This is a very special time for final spiritual practices and mental preparations, which can be shared with loved ones if it is the dying persons wish. This is a very precious time because it normally doesn't last long, as most people become unconscious (unresponsive) hours or days before they stop breathing.
Signs of Imminent Death
Eyes have glassy fixed stare with large pupils
Pasty grey, or blue greyish colour present especially on lips, hands and feet
Hands and feet can be cold
Jaw open, breathing through mouth very rapid or very slow (often with rattle) with pauses of 20-50 seconds between breaths
Unresponsive to voice or pain
It is most important not to do or say anything that might disturb or anger the person, like speaking abruptly, arguing, crying, rough handling; maintain a peaceful atmosphere with people praying, meditating or chanting according to the dying person's wishes or as instructed by their spiritual guide/teacher. Any supporters can generate limitless universal or devotion in their hearts and the wish for the dying person to be released from suffering with this love or devotion/faith and become unified with love, with god or with their source of inspiration and virtue.
Clinical Death
No breathing (chest does not move)
No heart beat (no pulse)
Pupils large, do not change
Sometimes release of bowel or bladder
According to Buddhism, death is a process with stages: after conception, formation proceeds from subtler to grosser, but at death there is dissolution from grosser to subtler. The four elements: earth (hard substances of the body), water (fluids), fire (heat), wind/air (energy, movement) degenerate and dissolve in sequence and there are external signs and internal visions at each stage. In the final stage of death all the gross consciousnesses dissolve into the emptiness of clear light, where with previous training one can discover the fundamental innate reality. Because of this continuity of mind moments, the state of mind at the time of death is vitally important, it's most important to die with a calm and peaceful mind; with strong spiritual/ positive thoughts prevailing.
Friends and family can best help the dying continue their journey after "clinical death" by generating calm, accepting, supportive thoughts for the deceased, each other and expanding into altruistic, universal good-will and love through their prayers and meditations. Buddhist masters recommend maintaining a peaceful atmosphere and if possible allowing the death process to proceed undisturbed, by not touching the body until all the heat has left (indicating that the most subtle consciousness has left the body). If the body needs to be cleaned or moved it is advised to touch the top of the head first so that the consciousness abiding in the heart chakra becomes aware of this and leaves the body through the crown. Beginning with the facial muscles, "Rigor Mortis" (Latin for stiffness of death) develops, then wanes from 3 hrs to 36 hrs depending on muscle mass and environmental conditions, (cold retards rigor mortis) with a maximum stiffness at 12-24 hrs. If there is not too much disease, physical damage or medication in the body, a small amount of blood leaves from the nose and a small amount of white fluid leaves from the sexual organ, which is a certain sign that the most subtle consciousness has left. This can take up to 3 days and even longer in documented cases of very accomplished meditators. According to Buddhist texts, death is the separation of body (physical form) and "mind" formless, clear, luminous and knowing. (Only the most subtle level of mind transmigrates.) After the consciousness leaves, the body will soon begin to smell from the decomposing process and all that is left is a corpse.
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