October 13, 2012
The world celebrates hospice and palliative care day on October 13. The goal of hospice care is not to halt the disease process or to find a cure but to relieve suffering and to enhance the quality of life in patients diagnosed with diseases like cancer, chronic obstructive pulmonary disorder, kidney disease, liver failure, progressive degenerative neurological conditions and so on. Respect for the dignity and worth of human life is a significant aspect of hospice care.
Enhancing the comfort levels of patients and affording an opportunity for healing on psycho-spiritual levels in the end-stage of life is what makes hospice care unique.
Death is a journey and anyone who has taken a trip knows very well that there is preparation involved. One has to get ready for the trip… prepare physically, psychologically and spiritually. It is the time to reconcile with loved ones, to say ‘thank you’ and ‘I’m sorry’ and all other things that were kept unsaid. The only difference is that for this journey you do not pack your luggage. Thus end-of-life is an opportunity to bring closure to one’s life, sort out issues that need to be sorted out.
The preparation is not just for the patient who is dying but for the family as well. Even when the person is ready to leave this world, he/she may be concerned about the family/loved ones. They may wonder “will they be okay after I’m gone?’ Family needs to let go and convey to the dying relative that “We are going to miss you but we will be okay.” This permission obtained before death makes the transition a bit easier.
Nutrition and hydration in end-of-life care are vastly discussed and deliberated topics. As the body is preparing for departure, usually a week or two before death, the person stops eating solid foods and prefers liquids. This is the most difficult concept for the family to understand who out of love and concern for their loved-one, tend to feed the patient by force, often prying the mouth open with a spoon. The chances of choking on feeds and aspiration are higher in patients with compromised consciousness. When the digestive system is shutting down there may be distention of stomach, absence of urine output, edema of hands and feet and it is advisable to decrease the intake of feeds considerably.
Dehydration at the end of life increases the comfort levels of the dying patients. Breathing becomes easier when there is less chest congestion and fluid build-up in the lungs. Need for suctioning increases when the fluid build-up increases in the throat thus causing more distress to the patient. Artificial intravenous nutrition or conventional interventions not only interfere with the natural dying process but also lead to swelling and skin abrasions. It has to be borne in mind that at this stage, they need psychological and spiritual energy to sustain them till death and not physical stamina. Dryness of mouth is the only adverse effect of dehydration which can be relieved by regular mouth care with a salt-water mouth wash and ice chips or tiny sips of water.
Agitation, irritability, picking on clothing, bed sheets, talking to loved ones who have gone before them are commonly seen in end-stage patients. They see them on the wall, in the room and hold conversations - “I’m coming; wait for me,” etc. Temperature sometimes fluctuates. The person becomes warm to touch sometimes and cold or sweaty at others.
Blood pressure can be erratic, skin becomes pale or yellow. Changes in breathing pattern are also visible at this time which could range from long, labored breaths to shallow gasping breaths. Respiratory congestion can occur in some accompanied by a rattling noise while breathing. The ‘death rattle’ sometimes lasts for just 10-15 minutes but at times can last two to three days. Breathing becomes more labored as the hours go by.
When death is a day or two away sometimes there is a sudden surge of energy. The person wants his or her family to be with him or her. They might express a desire for a favorite food item. The person often has a glow on his/her face. This calm before the storm phase does not last long. The last few moments are generally dependent on what life has meant for the person and how ready he/she is to part with life. Transition into death from life usually becomes a smooth one if there is no unfinished business and the person as well as the family is well prepared for departure.
Dr Lavina Noronha - Archives :
- Palliative Care: Not Counting Days but Making Days Count
- Special Parents of Special Children
- Drugs Everywhere- Parents Beware!
- My Brief Encounter with an ICU
- Understanding Alzheimer’s Dementia
- Violence in the Home - ( Part II )
- Violence in the Home - Part I
- A Tribute to all Fathers
- One Life to Live...
- A Death that wasn’t ...
- Straight talk about death...