The Process of Dying

Death has always been a part of life. Since the 18th Century there has been a shift from home to hospital, death has become medicalised, and the dying have no control of the process.

  • Before hospitalisation, most people had contact with the dying and understood the process.
  • The dying person was the centre of attention in the home.
  • The modern dying process largely occurs 'out-of-sight' and most people are uncomfortable with the dying.
  • Right-to-die groups demand a 'death with dignity'.
  • Hospice provides comfort care and encourages people to male the most of the life they have left to them.
In generations past, dying was seen as a natural process, it was an expected part of the process of living. Today, medicine and medical technology have developed to the point where the process of dying is not so clear cut anymore.

It was in the 18th century that there was a shift of death from home to hospital. It was the beginning of major cultural revolution in Europe. The West is now in the midst of another cultural revolution, one where palliative care is leading the way.

In health care, the trend is to become more patient centered, rather than medicine centered. With this change, quality of life becomes central, replacing cure as a mode of control.

Before the removal of the dying to hospitals, dying people were cared for at home by their family. They were the centre of attention with people coming to visit, make their peace and say their goodbyes. Their wants and needs were put first. They were, at least to some extent, in control. 

There were few people who had not had some form of personal contact with the dying process.

In contrast, people dying in developed countries today are, to a certain extent, hidden away from view. The dying process has become more formal and the dying person often feels as though they no longer have any control over what is happening to them. This is also seen as a loss of personal autonomy.

The ability to prolong life, despite the inevitability of death from a terminal illness, has resulted in a growing number of people and organisations demanding the 'right' to 'die-with-dignity'. The term 'death-with-dignity' used here does not refer to hospice care.

Doctors, nurses and dying 
Doctors study many years learning their craft. They value 'Life' and make all efforts to preserve it even when a patient and people near to him/her "start thinking of death as the better option". 1

This attitude, the desire to heal/cure, leads doctors to view death as the enemy, to be defeated at all costs. In the past, this contributed to dying people being hooked up to machines and being treated 'aggressively' whether they wanted such treatment or not. The death of a patient is regarded as a failure in many cases.

As one doctor said in a submission to the UK House of Commons, Health Committee Palliative Care: "We all die ... 100% mortality is an immutable fact and it is not actually a sign of failure". 2

A UK study which looked at how much information terminal patients are offered regarding their diagnosis and prognosis, convinced the author that 
"Death and dying are over-medicalised, the disease process assuming primacy over the person."

"Patients within the study firmly located the fear of cancer and dying within their doctors; rather than within themselves. They reported having to 'fight for their diagnosis and prognosis' with very little, if any, information offered voluntarily. 

The most disturbing (for me) feature of the study was the reporting by patients that doctors and nurses 'withdrew' from the patient once the patient knew their prognosis. This was despite patients feeling that this was the time they most needed emotional support from their doctors and nurses." 3
A dying nurse wrote the following letter to her peers:
"I am a student nurse. I am dying. I write this to you who are, and will become, nurses in the hope that by sharing my feelings with you, you may someday be better able to help those who share my experience. 

We're taught not to be overly cheery now, to omit the 'everything's fine' routine, and we have done pretty well. But now one is left in a lonely silent void. With the protective 'fine, fine' gone, the staff is left with only their vulnerability and fear. The dying patient is not yet seen as a person and thus cannot be communicated with as such. 

I know you feel insecure, don't know what to say, don't know what to do. But please believe me, if you care, you can't go wrong. Just admit that you care. 4
To be fair, there are some doctors and nurses who would like to spend a bit of time chatting with a dying patient, holding a hand or reassuring them but simply don't have the time. Hospital structure almost seems to be designed to keep doctors from getting to know their patients well and they often have a better relationship with the family than the dying person. 

Another difficulty facing medical professionals is the need to keep a certain emotional distance so they are not too distressed by the patient's death. 

Dying with hospice
Hospice works to help people live while dying and offers an alternative to EAS. When the dying person is being cared for by immediate family members, they are often put under great emotional stress, in many cases more than the patient. 

Anti-euthanasia activist and former California Commissioner on Aging, Brian P. Johnston says, "A properly run hospice programme offers genuine care and intervention to meet the physical and emotional needs of both patient and family." 5 He goes on to say:
"Hospice is a special way of caring for terminally ill patients, their families and loved ones; it is not a building or a location. Hospice can take place in an acute-care hospital, at a convalescent hospital, or at a facility that is especially established for that purpose. Often hospice is done in a person's own home.

Hospice care enables patients and their families to live as fully as possible during the final stages of life. The emphasis is on living, not on dying." 6 
"Dying can be considered a journey one takes alone with a crowd" remarked Dr Roger Bone in an article he wrote while dying from cancer.

The approach of death
There are some signs and symptoms that may indicate that the dying process is approaching. These changes may help you recognise the approach of the dying process:
  • Increased fears, including a fear of being left alone
  • Increased awareness of spiritual and/or religious issues
  • Withdrawal from family and friends
  • Increased weakness, requiring more assistance with care
  • Increase or decrease in pain
  • Increased drowsiness and sleeping
  • Decreased swallow reflex
  • Decreased desire for food or fluids
Usually the more symptoms the patient experiences, the more likely they are approaching the dying process.

The hi-jacking of the hospice movement
EAS opponents make the accusation that some hospice programmes have been infiltrated by the right-to-die movement, pointing to the practice of terminal sedation. 

Dr Gerard Daly in the UK, admitted his mother to a hospice not suspecting that after admission that she would be administered unnecessary drugs and be dehydrated so that she would decline rapidly. He has this to say:
"I was shocked when my mother was sent home to me in a coma without any explanation. 

At the time, in 2002, I did not know about the practice in hospices of "terminal sedation". Terminal sedation is the deliberate administration of sedative drugs to deprive the patient of consciousness until death has occurred. While this is justified by some palliative care doctors on clinical grounds, such as control of pain and other symptoms, it is open to abuse and could be used for deliberately ending a patient's life. 

I also did not know about "anticipatory prescribing" which saw my mother written up for drugs irrespective of clinical need. I would rather my mother had a different experience of care until natural death, where her physical and spiritual needs were respected instead of violated." 7
In another article Dr Daly warns:
"The public has not yet caught up with the reality of modern day hospices. The propaganda and image presented by hospices, which rely on charitable donations from the public, is that hospices provide a caring environment for a loved one to die with dignity and with minimal pain. 

The reality is that hospices are run more like hospitals except that they are less well funded and often do not have the same standard of management. They also do not have the same facilities for patient treatment and care. It might be considered that hospices could provide that which is not considered as easily available in hospitals, namely care for the individual. However, the nurses in hospices are just as likely to be overworked or insensitive to patients needs as anywhere else. 

Modern hospices are increasingly bureaucratic and managed like other health institutions. Some are involved in research in clinical care for the terminally ill that depart from traditional notions of care. The modern methods depend increasingly on harmful drugs which the patient may not need or which may be inappropriate. Less harmful treatments could be given which do not increase drowsiness and risk the patient becoming unconscious." 8
Opponents to EAS point out that even when a person has made a decision to die naturally of the underlying illness, this choice is often taken away from the dying person because of economic factors and the assumptions made by doctors concerning the quality of life of a terminally ill patient. 

What to look for
EAS opponents have put together a watchlist of things to be aware of when a loved one is admitted to hospital.
  1. Oversedation causing lethargy And unresponsiveness, difficulty or inability to awaken a patient.

    Some patients, especially the elderly, are very sensitive to pain medications which are slowly metabolized by the liver. Toxic levels build quickly with very small doses commonly producing lethargy and unresponsiveness. Elderly patients require approximately 20% less of the normal adult doses.
  2. A Hopeless Picture Of Any Recovery

    The patient appears to be comatose and dying. The medical staff affirms this with overwhelming reports and statements.
  3. DNR/DNI (do not resuscitate/ do not intubate) also referred to as a No Code Status in some countries

    The consent is obtained from the family. It is a request to deny a patient delivered emergency care in a life-threatening situation.

  4. Lethal doses of Dilantin or narcotics?(morphine)

    This will hasten the death, shortening the hospital stay and expenses.
  5. Transfer to Hospice without tube feeding or IVF

    Due to sedation and inability to eat or drink the patient will die of dehydration and starvation.
If a loved one is lethargic or unresponsive demand to see the medical chart and medications sheet. If you do not understand the terminology and medications, consult a pharmacist. A computer printout is available at pharmacies on most medications.

Think twice before giving consent to a "DNR" It has been used by nurses and doctors to hasten the death of their patients. Furthermore, it not only denies emergency medical treatment but many professionals also deny the following: antibiotics for pneumonia: medications and assistance to choking victims.

Patients being transferred to hospice do not always have a terminal illness. Ask to see the chart especially in regards to unresponsive elderly and comatose patients. Remember that "comatose" is not a terminal illness, but not receiving food and water will make anyone terminal! Always ask for a second opinion. If necessary call your lawyer. 9



References:
    1. "The Flip Side of the Coin"
    2. Q162 (Dr Keri Thomas) House of Commons, Health Committee Palliative Care Fourth Report of Session 2003?04 Vol. I 
    3. Keith Ward, c/o Wakefield and Pontefract College of Health Studies, Pontefract General Infirmary, West Yorkshire.
    4. Anon, American Journal of Nursing, 1970
    5. Brian P. Johnston, Death as a Salesman: What's Wrong with Assisted Suicide Chapter 2, pg 15
    6. Ibid Ch 2, pg 16
    7. Dr Gerard Daly, PhD Shooting the Messenger: Unpalatable Truths of Hospice Care
    8. Dr Gerard Daly, PhD Hospices? A Trojan Horse For Covert Euthanasia?
    9. Mary Therese Helmueller, R.N. Are You Being Targeted For Euthanasia