Introduction Part 2
Confronting personal mortality
You cannot become expert at caring for the dying and bereaved until you confront your own mortality. The situation is similar to that with sexual behavior: A physician must become desensitized enough with sexual behaviors to discuss and deal with all its aspects in patients. Likewise, and to a greater degree, the physician must become familiar with death, dying and grief so that dealing with it does not cause anxiety, fear or depression that impairs care giving. This is more easily said than done. There is no curriculum for death confrontation, but attending funerals, spending time with bereaved people, sometimes meditating (or praying) on your own death may be useful. There is no more important task on the road to becoming a good physician for all patients.
How to listen (and talk) to the dying and their families:
1. This is talking to oneself, you might notice, or did you forget that you're dying too, only a little more slowly (maybe)?
2. There is no way to tell bad news in such a way as to make it painless. You can't say it so well that it doesn't hurt. Joke So just say what you have to say and then....
3. The Chair:
The physician or health care provider should get a chair and should sit in it herself. Perhaps the recipient of bad news should also sit as they say in the movies, but it is most important that the giver of the news does. This act communicates that the news giver is not going to run away, and is prepared to abide with the recipient.
4. The Tea Ceremony:
After bad news has been given, either of a dreadful diagnosis or the death of a loved one, just sit and listen. If nobody says anything, then offer a small kindness such as offering a cup of tea or some other helpful gesture. Or simply ask what you can do to help or express the fact you can't think of what to say to make things better but would like to help anyway. Take your time. Your own time and attention is all you have, so offer it. The good news is that your own time and attention is enough. The only thing you can do wrong is run away, but that may be what you want to do most.
5. Kubler-Ross and the Stages and what they mean:
It is a big mistake to assume you know what "stage" the patient is going through or how they feel. People often feel very differently than you expect them to when they receive very bad news. Don't impose your feelings or religious positions on them. Respond to their expressions, but don't use any "pat phrases" at least not until you know what they are feeling.
It's quite likely that the worst time for a grieving person will be several months after a death. Call them then. There may be several questions they have that they couldn't hear the answer to when you told them or that never got cleared up at all. They may need support most after the funeral is over and everybody has gone back home.
Care of Pain and other distress in the dying
1. Consider non- medical causes of pain and non-medical solutions
A. Non-medical Causes
1. Fear of pain
2. Fear of abandonment or loneliness
3. Spiritual distress
4. Anxiety over "unfinished business."
2. Consider non-narcotic treatments
Depression is different from grieving although making the distinction is not easy. If energy level and physical components of depression are prominent, consider antidepressants.
B. Anti anxiety agents:
Sedatives often are to be avoided because they interfere with the ability of the person to deal with the issues they need to deal with. But when anxiety is the prominent symptom, a short course of short acting anti-anxiety agents may be indicated.
D. Counseling, including religious referral.
Dying people are not dead. They may need nothing more than people treating them like they are alive. Get their relatives to take them shopping or whatever they liked. Let them forget their medical condition. Give them a chance to deny.
3. But when you need narcotics, use them in full force
A. The goal of narcotic treatment in the dying is the permanent eradication of pain and the memory of pain!
B. Never order drugs "prn" because that means they will have to experience the pain to ask for the drug.
There are a few exceptions:
A caregiver may be trustworthy enough to adjust of narcotic doses; Sometimes when a baseline, constant dosage of narcotics is being given, a prn is needed in addition for "breakthrough" pain.
C. Addiction is NEVER a consideration.
D. Anticipate narcotic side-effects, particularly constipation;
treat constipation when a narcotic is started.
E. Increase doses of narcotics by a percentage (usually 33 or 50%) of the baseline dose. So if 10 mg of morphine po q 3 h doesn't work, increase to 15 mg, but if 100 mg doesn't work increase to 150 mg. If 1000 mg doesn't work any more go up to 1500. I have personally prescribed all those dosages without serious side-effect.
The Process of Making Decisions about the restraint of medical intervention
1. The distinction between law and ethics:
Ethics discusses conduct - right and wrong. The law consists of rules we are bound to live by. The law, ethics of the society rather than imposes them; ethical discussion influences legal generally, reflects the decisions, albeit slowly. A principle of the law in the U.S. is the state should not interfere with personal ethics without compelling reason. Such reasons may include protection of life and assurance of a standard of fairness in the decision making process. Emphasis is on law here, because doctors need to know the legal boundaries of their options. Moreover, summarizing law is difficult enough; the scope of ethics is truly mind-boggling. Those aspects of ethics that operate in society, mostly in the form of law or widely accepted standards of medical practice, are put forward here. But beware; there are many very much different ways ofunderstanding these topics.
2. The Principle of Autonomy
4. Substituted Judgment:
Using the principle of autonomy, the mandated method of making health care decisions for people who can't communicate is substituted judgment. Substituted judgment means what a person would have wanted if they could make their wishes known, not what the surrogate would want for themselves or believes is in the best interest of the patient. Surrogates are charged with making the decision as if they were the person involved. They are agents for the patient. "Do unto others as you would have them do unto you" is not the standard, but rather "do unto others as they would wish, if they could speak for themselves."
5. Durable Power of Attorney:
Durable Power of Attorneyfor health care is the same thing as a proxy. You must be sure that it is both durable and for health care because an ordinary power of attorney relates to management of money and property and has nothing to do with health care decisions.
6. Living Wills
7. Concerns about autonomy
1. Cultural bias
Autonomy is a cultural norm in the US but not in all cultures or in sub-cultures within the US.
8. Limits of both living wills and POA/Proxies
1. Burden, impossibility of objectivity
One can never be sure that the person who made an advanced directive would still feel the same way after they got sick. A proxy may feel burdened and be unable to make decisions when the crisis arises. No matter how hard people try, they are never truly objective and have personal and sometimes financial and other interests in the outcome.
9. What can be refused?
1. Artificial feeding
Which includes N-G tubes, gastrostomy tubes, parenteral alimentation and IV fluids.
10. Food and water, blankets, cleanliness are not medical technology and must be offered to everybody regardless. I take this seriously enough to ask that dying people, even in coma, be offered water to the mouth.
11. The same things can be withdrawn as can be refused This sometimes feels different to decision makers. Once the respirator is in place, it is difficult to stop it and easier to forego starting it. But legal rules make no distinction, and neither do ethical principles.
12. Pain can be treated even if this may shorten the life of
It is permissible legally, and in the view of many ethicists, morally right, to treat intractable pain by any means necessary. Even if death may result, such treatment is permitted as long as the intent of treatment is not death.
The Supreme Court unanimously and eloquently affirmed this distinction between assisted suicide and risky treatment of death in Vacco vs Quill Some call this "mixed-effect" treatment. You can read Sandra Day O'Conner's concurring opinion here which shows the current legal thinking on this issue eloquently in my opinion. You can find all the supreme court opinions that ever were at Findlaw. That's where I got these opinions and it is a wonderful resource.
4. Should futile interventions be offered? Who decides futility?
When somebody says, "I want everything done" "Everything" could include a very large range. Should we offer such people the option of cryogenic preservation - freezing their bodies in the almost certainly futile hope that they may return to life alive and well? On the other hand, should doctors withhold information on the basis of futility when the patient may not agree with that assessment? Some feel that Cardio-pulmonary resuscitation should not be offered in certain cases, such as nursing home patients with terminal non-cardiac diseases, because of futility, but this is not standard practice. There is some concern that doctors may be overly pessimistic in some settings.
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