Dying with Dignity, with Mary Bennett Hudson

''How a person dies not only determines the nature of the final period of his existance, but, in many cases, the enduring memories held by those who love him.''

— Justice Stephen Reinhardt, 9th Circuit Court Ruling 1996

Diane: What are the tenets and premises behind the Hemlock Society?

Mary: Our mission as stated in our literature is to maximize the options for a gentle and dignified death. We don't say how anyone should choose to die, but we do believe that people should have choices. This includes the legalization of physicians' aid in dying for those terminally ill, mentally competent adults who request it.

Diane: Is physician-assisted suicide legal anywhere in the world?

Mary: In the U.S., Oregon is the only state where physician aid in dying is legal at this time. It's also legal in the Netherlands and the country of Columbia.[1]

Diane: What other issues has the Hemlock Society been involved in.

Mary: Currently, the Hemlock Society has pushed to the forefront the issue of painfree dying and better end-of-life care.

This involves giving up on curative treatment when the patient requests it, and concentrating on comfort care and emotional support during the dying process for both the patient and the patient's family.

In the past, doctors have said we have to preserve life at all cost. We have to tube feed, we have to give antibiotics, we have to do radiation, chemo and surgery, even though the outcome for the patient is not going to be changed. Death has not been an option. Cure as been the goal right up to a very unrealistic point in the disease.

Some doctors are not honest with their patients about the choices and chances of survival, and the result is that many patients are put through agony, their finances drained, and their families' emotions exhausted. They don't have the opportunity to do the end-of-life things that everyone is entitled to do, such as saying their thank-yous and goodbyes and making amends for things they regret. Also, putting finances in order, tightening up trusts, and making sure the children are taken care of.

People need to have an opportunity to do these tasks at the end of life, and with doctors not being honest about patients' prospects, patients and their families suffer because they don't know that they ought to be doing these things.

In hospice care, it's a given that patients are not going to recover and that they should, if they wish, do these things and prepare to die leaving the best memories possible. Then their families can feel good about having given their loved one the most emotional and physical support that was possible.

Sometimes, though, the patients are prisoners of their families. The patient is saying, ''This isn't helping. I don't want everything done. I just want to get it over with'' — while the families are saying, ''Do everything there is to be done.''

You know, we talk about euthanasia as being this little Nazi doctor who comes in the dark of night and gives you an injection. It is not. ''Euthanasia'' is a Greek word. Eu means good, comfortable, pain-free, normal. . . for instance, if a patient is euthyroid, then he is neither hypothyroid or hyperthyroid, he is normal. Thanatos is the Greek word for death. So euthanasia is a word for normal death, one that is not prolonged painfully with measures that are not going to be helpful.

There are various kinds of euthanasia.

There is ''voluntary passive'' euthanasia, which is letting death happen, as in refusing treatment or removing life support. It is exercising the Living Will. A person might say, ''When I reach a certain point when I am dying, I do not want my life prolonged with life-supporting procedures.'' It is providing a good death and is perfectly legal.

Then there is ''voluntary active,'' which is taking medication to end your life.

Diane: Such as when ill persons choose to end their life themselves?

Mary: Yes.

The next form is ''involuntary passive,'' such as when patients are unconscious, have really never talked about what they want, and the family says, this man is suffering, he's not going to get better, he wouldn't want to go on like this. . . Let's just let him go naturally with the help of comfort measures, including pain medication, as if there were a Living Will.

''Involuntary active'' would be mercy killing where the patient had not requested it.

Diane: So it sounds to me that this issue is about choice.

Mary: Yes. As it should be.

Diane: When you spoke earlier about better pain medication, what did you mean?

Mary: Many people think that they are not going to be able to function when they receive strong pain medication. The truth is that the only category of medication that does not affect any organ systems is the narcotic family of drugs.

The anti-inflammatory medications are hard on the stomach, and in large doses they damage the liver or the kidneys.

Morphine, Dilaudid, and OxyContin, on the other hand, do not damage any organ systems.

If a large, sudden dose is given, it results in respiratory depression and death, yes. But in doses needed to control pain, no. Pain will rise as either the disease process progresses or as one's tolerance to the drug diminishes — those two conditions require doses to increase.

As those doses increase, people are still able to function unless their disease has progressed to where this is not possible. Sometimes with cancer you have brain metastasis, and this is what causes a patient to become comatose. Patients on fairly large amounts of morphine do drive and do work. They go to plays and movies, and go out to eat, and enjoy life where before they were racked with pain.

It scares me that there may be changes in the law with Oxycontin. This is a wonderful drug for people who have chronic pain where they need smooth coverage, not yo-yoing in and out of pain as they did before. I don't think it's fair that good people suffer at the effect of drug users who abuse this medication. This medication is still essential to the continuous, 24-hour comfort of people with chronic pain.

Diane: So you're saying that the drugs you mentioned are considered to be good pain medication?

Mary: Oh, yes. And they can be in long-acting form, so that you're not living from pain to pain — you're not yo-yoing up and down between pain and comfort.

Diane: So at the end of life a person can be conscious and not totally out of it?

Mary: Yes. I'm a retired hospice nurse and I've had patients who were conscious right up to the end. I remember one night a patient's saying, ''I'm going to die in a little bit, aren't I?,'' and I said that yes, I thought she was. And she said, ''Well, then, in an hour or two I guess I'll know, won't I?'' She was referring to heaven. She was very alert with the process.

Many people are not. Sometimes the morphine is sedating them, but very often they would be comatose anyway because of their disease.

When you are terminally ill, your liver and kidneys cease working. Because your liver and kidneys aren't working, you have metabolic products in your blood that are affecting your brain. You're not functioning. People attribute it to over-medication, but it's not.

We also know that at the end of life many people are very restless and have to be physically restrained, with their feet and ankles tied. Medication to sedate them is much more humane than tying people up.

Diane: Let's talk about doctor-assisted euthanasia.

Mary: We would like to have it legal for patients to take medication that could be ordered — legally obtained — and not have the family risk guilt in being there when the patient takes it, or having to do anything clouded with illegality to obtain the drugs.

We consider this the ending of their suffering, not the ending of life — life goes on at another level. We believe this should be a vital option for people, and that there should be no risk of imprisonment.

In the not-too-distant future, this option will exist. But before then, people should not have to jump from the 15th floor of their condo or shoot themselves with guns and take the risk of not dying.

I had a patient who shot himself through one ear and out the other and did not die. He died as a hospice patient due to dehydration. He was not given an IV because he had a Living Will — but he did not die from the gunshot wound. Shooting yourself is not a sure way of dying and not a way that is kind to the family member who finds you.

Diane: And also, when you consider the passage of death as a process for yourself and your own Soul, think of the stress it takes to pull yourself together to do such a thing to yourself.

Mary: It's not dignified. Dying should be peaceful.

And everyone should have the opportunity to make solid their relationships with the people who care about them and whom they care about.

Very often ''caring'' is part of wanting to end life. Patients with neurological diseases where death is not strictly imminent, as with ALS,[2] Parkinson's, and multiple sclerosis, are sometimes reluctant to put their families through the expense and the long periods of care with no good outcome.

Some suffer physically with pain that is debilitating. Even the pain specialists say that 90 to 95 percent of pain can be relieved, but often doctors are unwilling to relieve as much as they can — they may choose to relive 75 percent, but the patient is still in pain.

Other patients, those with ALS, fear suffocation. They fear not being able to get a breath of air and dying of air hunger. That's a terrible thing to look forward to. While they can, some wish they could end their lives before they are totally dependent on a ventilator and unable to move a muscle.

There are people with these diseases, and other physical challenges like those of Christopher Reeves and Stephen Hawking, who have the potential and the drive to continue making huge contributions. They choose to believe that their lives are worth going through what it takes to support them, and their families are willing.

But there are patients whose families are not really able to do this. There are patients who do not have anything left. They are at the end of their lives and they feel they don't have anything to contribute by going on living. They do not wish to be a burden to society and their families. They feel they are being forced to purchase care they don't want, and they would like to be able to end their lives. Currently, drugs to do this humanely are not available to them.

Diane: What are the drugs that would be used to do this?

Mary: In Oregon, the State Department of Pharmacology[3] came up with a protocol for ending life. The medication has to be administered by mouth, because that is, in a sense, a guarantee that the patient is not being prevailed upon to take it — that it is voluntary. They use a respiratory-depressant sleeping medication, along with an anti-hermetic, so they won't vomit, and a beta blocker, which decreases the adrenaline excitement of the moment and makes the patient calmer but not sedated, so he still maintains his mental competence.

Diane: In order to actually take the final step himself?

Mary: Yes.

Diane: What are the fears that people seem to have about euthanasia?

Mary: Well, many people say ''God will take you when He's ready,'' ''Suffering is good for the soul,'' ''It will be abused,'' ''It will be used to put people who are a burden out of the way.''

Diane: It that possible?

Mary: Not under the law. But I suspect putting Grandma in a back room, shutting the door, and letting her die of bedsores and malnutrition is done more than we would like.

There is a woman who is serving 22 months for not getting medical help for her mother. Maybe she could have gotten social services, possibly hospice — the mother was not terminally ill, she could have perhaps put her in a Medicaid home. Her mother refused medical care, refused to take medication, and refused to eat. The daughter let her die, and was sentenced to 22 months in prison. The judge said she should have obtained medical care for her mother.

Well, her mother rejected medical care and she wanted to be left alone. It's really hard to say, but in a sense the daughter was respecting her mother's wishes, and let her die. And as a result she was accused and sentenced.

People also fear that doctor-assisted suicide is the beginning of a slippery slope and could be abused.

The slippery slope goes both ways, though. We have gone up this slippery slope with doctors saying once you start tube feeding you can't stop it. I heard this the other day from a family who called and said the doctor wouldn't remove the feeding tube.

Ending life support is legal and ethical. Actually, it's more ethical to start life support, and if the patient responds you continue, if not, then you stop. Removing life support is more humane than not starting it.

Diane: Is there any headway being made nationally?

Mary: There is a movement sponsored by the American Pain Society and many other groups. More states are constantly seeing the ethics and humanity in making pain control more possible. But at the same time there is fear of people's misusing drugs and reluctance to have drugs too readily available. Doctors are afraid of being accused by the DEA and state agencies of over prescribing.

Diane: When does what happens with the patient become the decision of the family?

Mary: Section 765[4] says that if a patient does not have a Living Will, then the decision falls to the Court Appointed Guardian or the Spouse. Then come the adult children. There is a list in order of ranking as to who will make the end of life decisions if there is no Living Will to say what the patient would have wanted.

Everyone should have a Living Will. You can get it at any hospital. You can get it from the Hemlock Society (hemlock.org). This is very important.

There is a case in Tampa, Florida, where a woman has been in a coma for more than 10 years. She was a young woman, and during surgery she had a cardiac arrest and has not come out of coma. The husband says she would not have wanted to go on this way. The family say they see signs of awareness and want her to recover and testify against him. They accuse him of wanting money that was from a court settlement as a result of her injury during the procedure. It is a dirty fight.

She did not have a Living Will. One judge decides for the husband, and one decides for the family.

So if you care, make a Living Will. Make many copies. Put one in a plastic bag on the refrigerator, give one to your doctor, one to your neighbors, one to go with the ambulance who will take you to the hospital — many copies, all accessible. None of them locked in a safety deposit box.

Make your wishes well known. Tell your family members that no matter what they want, you want your wishes followed, not theirs.

Appoint someone as your Surrogate (sometimes it's called a Power of Attorney, or Agent for Health Care Decisions). And make sure you appoint someone who will make your decisions. This would be mainly in end-of-life cases, to make sure that your Living Will is managed as you would wish.

The Surrogate also has power when you're not terminally ill but cannot speak for yourself.

The Living Will comes into play when you are permanently unable to make health-care decisions. You no longer need to be terminal or have in-stage disease or be in a persistent vegetative state.

Your Surrogate needs to be someone who knows your wishes and is assertive enough to be an advocate for you — someone who will stand up for your wishes when you are unable to speak for yourself.

It's a hard job, but someone has to do it.

These documents are readily available. Most hospitals will give you a copy. It does not need to be a State form, and it does not need to be notarized — only witnessed by two people, one who is not a family member.

One of the more well-known was the Karen Ann Quinlan[5] case, which went to the New Jersey Supreme Court. Her case was one of the landmark cases where life support was removed and she did not die, so they continued tube feeding her. She was a very young woman.

Everyone should have a Living Will, no matter what their age, if they care what happens to them and don't want their family embroiled in legal arguments.

Just make it clear what you want and get it in writing. Tell your friends and family what you want for yourself. It will save everyone a lot of turmoil.

People are beginning to talk more about end-of-life care. They are beginning to realize that yes! there is an end to life, and we do need to think about the care we would choose to have or not have. We are beginning to be more realistic.

We also have patient advocacy. When families call to say their patient's Living Will is not being handled, we help them to know how to present the issue to the medical establishment to get the patient's wishes carried out.

Diane: That's more indicative of the no-resuscitation orders and the pulling of plugs, right?

Mary: Yes. We also have a program called Caring Friends, where we will sit with someone when they ''self deliver.'' We will not obtain medication and we won't give it to them, but we will sit with them.

We do not do this randomly. The person considering self delivery needs to submit medical records to the Denver office. We have a senior medical committee that reviews to see if the patient is competent, and terminal or helpless. We send volunteers to evaluate the patient before getting involved in self deliverance. But for those who warrant it and wish it, we provide someone to be there. That is a comfort to our members.

Diane: Doesn't this put the Hemlock society and the witnesses in a predicament.

Mary: We are careful not to assist. We only sit there with them. Currently, some states allow social workers to be with patients who self deliver. There's precedent for this.

Diane: So it is not illegal to kill yourself?

Mary: No, it's not. But it is illegal to assist.

The Hemlock Society has a video on self deliverance[6], and there are books available, like the one entitled Final Exit.[7]

Those of us involved in the Hemlock Society feel people should be able to choose the circumstances in which they die.

Diane: We can only hope that things will become more progressive.

Mary: I don't think in this Administration that the climate is right. But I think pressure is going to build up for changes, and four years hence we may have better stem-cell research and better end-of-life care and more choices in how we die.

Diane: We can only hope. May those four years pass quickly.

Mary: Yes. We need to continue to promote these ideas.

Diane: Thank you, Mary.

Mary Bennett Hudson is president of the Hemlock Socity of Florida and a former national boardmember. You can contact the Hemlock Society at hemlock.org.

Footnote:

Legalization in Oregon and Columbia and Netherlands see: Oregon's Death with Dignity Act; Dutch Voluntary Euthanasia Society; Fundacion Pro Derecho a Morir Dignamente (Columbia).

Amyotrophic lateral sclerosis, commonly known in the U.S. as Lou Gehrig's disease.

To read more about the Oregon State Protocol for ending life see: Implementing End-of-Life Treatment Preferences Across Clinical Settings.

Section 765 refers to Florida state law. This law will vary state to state.

Matter of Quinlan (excerpts), 70 N.J. 10 (1976) – Supreme Court of New Jersey.

ABCs of Self-Deliverance, Dr. Reuben Copperman — a physician explains how to use medications alone or in combination with a plastic bag to ensure a peaceful and certain death; must be a Hemlock member three months to order this video; 40 minutes, $20; and How to Self-Deliver for the Terminally Ill, Derek Humphry, 1999 — the author of Final Exit speaks to an audience about the how-to's of self deliverance; must be a Hemlock member three months to order this video, 65 minutes, $20. See Self Deliverance videos.

Final Exit: The Practicalities of Self-Deliverance and Assisted Suicide for the Dying by Derek Humphry, paperback, 206 pages, 2nd rev. ed. (April 1997) DTP; ISBN: 0440507855.