National Catholic Register: Is hospice movement going beyond end-of-life care?

By Judy Roberts
2/17/2006
National Catholic Register (www.ncregister.com)

STEUBENVILLE, Ohio (National Catholic Register) � Families who have contacted the nonprofit Hospice Patients Alliance are raising important questions about hospice as a movement.

Although hospice�s stated mission remains that of providing compassionate and dignified care to people at the end of life, some are asking whether hospices are starting to go beyond that role by hastening death instead.

Since the first hospice program was started in the United States in 1974, hospice organizations have served more than 1 million patients at the end of life by providing a range of services dealing with management of pain and physical symptoms and psycho-social needs.

Many families who have had a hospice experience speak positively, even glowingly, of it, saying a hospice was able to help them at a difficult time in a way traditional health care could not.

But, especially since the March 2005, imposed-starving death of Terri Schiavo, reports of a dark side to the hospice movement are emerging.

In the state of Oregon, for instance, legalized assisted suicide takes place in some hospices, according to Rita Marker, executive director of the International Task Force on Euthanasia and Assisted Suicide in Steubenville, Ohio.

Even in cases where the hospice staff does nothing more than provide support to the family during an assisted suicide, allowing the suicide to occur can be seen as a form of participation in evil, Marker said.

Although such developments don�t necessarily mean that hospice as a movement has changed, Marker said consumers need to be cautious before turning themselves or a loved one over to hospice care.

�You need to know who is in charge, what the protocols are, what the philosophy of that hospice is, and where they stand on the issue of food and fluid,� she said.

A spokesman for the hospice movement said that hospices neither hasten nor prolong dying. Stephen Connor, vice president of research and international affairs for the National Hospice and Palliative Care Organization, added that the Alexandria, Va.-based group has a longstanding board resolution against assisted suicide.

Where assisted suicide is legal, Connor said, a hospice patient cannot legally be discharged because he or she wants to take a lethal prescription. In those cases, he said, the staff may be present to support the patient�s family.

Food and water

Connor said his group�s standard on medically administered food and hydration is that �people have a right to decide whether they want those interventions or not. And a decision about whether they should have them or not resides with the patient, usually made in the context of a family system. They ought to decide whether they want it or don�t want it, and those wishes should be respected.�

Connor said hospice does allow the withdrawal of food and hydration, even when the patient is not in immediate danger of death, although individual hospice programs vary in their policies on medical nutrition and hydration. Some do not allow patients to have intravenous fluids or feeding tubes, for example, while others may permit them.

Former hospice nurse Ron Panzer called hospice �a wonderful service if done with integrity and morality.� But, since founding the Hospice Patients Alliance in Rockford, Mich., in 1998, he has heard from patients, families and caregivers who have concerns about hospice care, ranging from overmedication to refusal of food and fluid.

Panzer, who now works in home health care, claims that some hospices eagerly hasten death and fight every attempt to prolong life.

�They interfere at every step in ordinary care,� he said. �They�ll pull the rug out from a patient by removing food, hydration and medications, and refusing to provide treatment for easily treated infections.�

Church teaching is clear on the subject. Even when death is thought to be imminent, the Catechism of the Catholic Church (No. 2279) states that �the ordinary care owed to a sick person cannot be legitimately interrupted.�

Richard Doerflinger, deputy director of the U.S. Conference of Catholic Bishops� Secretariat for Pro-Life Activities, said even though a person is terminally ill, assisted feeding can still be a form of basic care that should be provided unless and until it is actually doing more harm than good to the patient.

Pope John Paul II, in an address to the international congress on �Life-Sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas� on March 20, 2004, said: �The administration of water and food, even when provided by artificial means, always represents a natural means of preserving life, not a medical act. Its use, furthermore, should be considered, in principle, ordinary and proportionate, and as such morally obligatory, insofar as and until it is seen to have attained its proper finality, which in the present case consists in providing nourishment to the patient and alleviation of his suffering.�

The church teaches that assisted feeding can be validly ...

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1 - 10 of 30 Comments

Libby
3 months ago
Doctors almost always overestimate the length of time patients have left. Just because a person dies sooner than what the doctor says they have left, does not mean that the hospice killed them.
merrywhiterose
11 months ago
Hospice is a special group of nurses that provide comfort & counseling for people when the dr. has given them 6 months or less to live. Hospice provides comfort for the family member, & it assists them & their family to deal with death. If a patient dies before that 6 months, it's not Hospice's fault. They can detect when someone is suffering usually before the family members can, & help ease that suffering w/Roxinol (Morphine Sulfate) and/or Ativan. Being an RN myself, I've learned a lot from them in a Long-Term Care Facility. They don't want your family member to die, but that's part of life.
Martha
1 year ago
I am a hospice nurse. I have five years of experience in home care and inpatient care. You have asked why hospice stopped someone's food and water? Could that person still eat and drink without choking on either one? If our patients have lost their ability to swallow, then we stop their food and water to prevent them from breathing food/water down into their lungs. If they do aspirate (the process of inhaling food/water into the lungs) it results in pnuemonia. Pnuemonia results in increased lung congestion, fevers, shortness of breath and other discomforts.

Some cancers put out a chemical that causes the person to no longer feel hungry. We offer food, but do not withhold it. They only want a bite or two. I have shared my own goodies from home (pizza, bagels, ice cream, apple sauce, yogart) to help patients want to eat something. It is amazing how they sometimes rally long enough to eat an amount they haven't wanted for days, just because it sounded good now.

The human body shuts down in many ways. Sometimes it is the heart, lungs, kidneys, or GI tract. When it is the GI tract, food won't process. If you feed them, they will throw it up because the stomach and intestines have slowed down or become blocked and they can't process the food. Unfortunately, we have even seen stool vomitted up from bowel obstructions. We try to do everything to avoid this. No one wants to vomit up stool, but if the bowel is blocked, it can do this.

As for stopping oxygen, I'm with you! What is that all about?!!!!! We don't take their oxygen away. We do use drugs such as Morphine Sulfate because it dialates bronchials in the airways and blood vessels, relaxes the patient so they are not constricting their airways from anxiety, and it helps relieve pain. Ativan is a drug that helps patients relax and get through the symptoms of hypoxia (a drop in blood oxygen) which causes oxygen hunger, agitation, and even seizures.

We may choose to give IV fluids to help with pain/restlessness. But it has its risks if someone has congestive heart failure or kidney failure. There is nothing that saddens me more than to have my patient go into what we call pulmonary edema (where the lungs fill up with fluid because there is too much fluid in the patient's circulatory system and the heart can't pump it well, thus allowing blood to back up into the lungs and fluid to be released into the air spaces) and I have to watch them drown, literally. It is the most helpless feeling one can have. They usually have kidney failure of some kind, and our diuretics no longer work to remove the excess fluid. Dehydration is a better state to be in. It is said to cause a sense of well being (no I haven't tried it, but I'm not dying). Hospice is a science of sometimes doing a balancing act. We try one thing without having something negative tilt the other way. I feel most of us who have chosen hospice do so out of choice because we want to help patients and families by taking the scariness out of the dying process by making you aware of what is happening and why it is happening. Death of all kinds has a certain pattern it takes, whether it occurs in the ER, ICU, hospital, battle field, or hospice. It is a process. I am sorry you had a hurtful and negative experience with hospice. We all aren't like what you have described. I have anquished over whether or not to give a comfort medication because it might end my patient's life sooner that it would if I left them in pain or discomfort. One hospice doctor told me this, "Its not the medication that is killing them, it is their disease process". That is how I can do what I do, and ask the Lord to forgive me when I might have done it wrong. But, they are dying, and I won't have them crying in pain up until the end. I hope you would do as well as the Lord has allowed me to do, with His guidance, should you wear my shoes someday. God Bless. We only want to help your loved ones and you during the difficult time that is death. Thank you.
eileen chmielewski
2 years ago
My feeling as stated before after my mom died are so that I never want to see any part of hospice again. What I explained earlier about my mom and fighting to keep her in the hospital and not more here which would have been extreme discomfort was being promoted by hospital administration, and I felt no other choice but to go along with hospice and she was kept 3 days until she was gone. They told me 3-5 days inpatient hospice after I request someone go in the ambulance to be moved with her I was an LPN myself and know she would not make thwe trip and if we were there they could not say she died on arrival to another facility if she died in an ambulance and we observed it. She had 3 insurances and I was told by insurance she had up until 90 days of coverage so they where geting paid for the bed.From the start of meetings and discussions I made it clear I was not for hospice at all, in
1992 I lost my husband to pancreatic cancer and had much difficulty with hospice then. I was told even by my daughter that in 18 yrs a lot had changed enough for
that the incident with my mom only reinforced my feelings and made things harder on me., I hope to never see them again .
Bill
2 years ago
I'm a hospice nurse and all I can say is "wow." I have to assume I have yet to see the bad side of hospice during my 15 years of nursing. Hospice isn't for every sick patient in the hospital. You can only receive hospice care if you have an illness that if it runs its normal course of action could lead to death within six months. You would only be referred for hospice if you met this criteria.

Hospice care is a philosophy. Hospice is made up of a team of professionals: doctors, nurses, pharmacists, social workers, clergy, bereavement counselors, home healh aides and volunteers.

I can feel the hurt in some of these posts. End of Life Care is petrifying for the families to experience. Many times the individual dying had made peace within themselves and accept their death more readily than their families.

From my experiences, it unfortunately appears to me that some of your dealings with hospice came too late in your loved ones illness as opposed to too early. The terminal illnesses that your loved ones were dealing with were already very far along. No one can pin point a specific time somone will pass. We do our best to foresee when the time is near to better prepare the family.

Hospice doesn't hasten death nor does it prolong death. Hospice's goal is to make the individual as comfortable as possible until death occurs. We have specific individualized physician orders to to control symptoms such as anxiety, pain, air hunger, discomfort, nausea and vomiting. The counselor and social worker are also in place to assist the families in dealing with the issues death and dying presents.

Orders are written by physican's, filled by pharmacists and administered by nurses. It is a checks and balances system. If a physician writes an order that is out of line with the presenting symptoms, the pharmacist will contact the physician directly to question/clarify the order. The order is written and filled. When the nurse gets the order to administer medications, it is the nurse's responsibility to make sure the order and the scrip matches the presenting symptom. This system makes certain that the hospice patient is not over or undermedicated. Medications are not wantonly administered to put a patient to sleep.

Hospice is not euthanasia. It provides comfort to the dying and to the caregivers

Unfortunately, death is a certainty of life. Its not pretty to look at but it can be horrific to watch. Seeing your loved one gasping for air, moaning in pain and drowning in their own secretions would be beyond agonizing to watch. Imagine now being the individual gasping for air, moaning in pain and drowing in your own secretions while your loved ones watched. How ugly is that picture?

I empathize with the people who believe the hospice personnel killed their loved ones. I cannot speak for every hospice worker. As a nurse, I am in awe of the clergy and social workers place in hospice care. Symptom management comes second nature to me as a nurse but dealing with feelings during death and dying is a different realm.

I'll close by stating that I truly believe if your family members were referred to hospice sooner, you would have a different feeling towards hospice. The hospice would have been with you for months prior to your loved one's passing. The hospice personnel would have had the opportunity to build a better relationship with you. You would have been better prepared to deal with the actual death and more open to bereavement groups. Bereavement isn't a fund raiser for hospice care. It's a service to help loved ones greive.

I hoped this helps someone considering hospice care make the decision that is best for them.
Bob
2 years ago
I have worked in the long term care field as a psychologist and have had many patients with terminal patients die. Several truths I notice 1) Hospice companies vary in quality and willingness to accomodate family wishes. 2) Many family members are at their worst during this time. The stress of the impending death bring out all the unfinished business among the family members that get acted out. A patient may be quite alright with dying but the a kooky family member and their anxiety gets the best of the situation. 3) Many people are really disconnected from the concept of death and dying. It use to be you were born and died at home regardless how long you were sick. The benefit was that the average person had an understanding and wisdom about death and dying that your typcial person today is quite blind to.
apark
2 years ago
This article represents some of the main views of this debate that I feel some readers disregard. Hospice and palliative care are intended for end of stage comfort care for any disease but can be off and on with hospice care and home health care for several months and years. Our communities in Iowa and South Dakota have very good things to say about these services. The focus of care for a dying or end-stage disease is to provide appropriate comfort and pain relief measures and symptom management. These medications given are not killing patients. Dying individuals can have a lot of pain, anxiety, agitation. With anxiety, respirations increase and may be labored, further increasing pain. It clearly states in many articles about end of life care that treatments to sustain life should be implemented IF these treatments would improve the life and well-being of the individual. If such treatments will hinder one's comfort and become a burden to well-being, then they should not be implemented. Such treatments as parenteral nutrition (nutrition via intravenous routes), oral food/liquids, dialysis, life-saving treatments and so much more. All patients have the right to refuse any treatment and should be completely informed by personal physician of care. Nurses are proposed to implement care, advocate for the patient and family, educate the patient and family. If anyone has any question or concern about their care or the care of their family member or friend, they need to ask and investigate their options. They need to have a plan and be aware of all options and can stop options chosen if desired.

Death is a difficult time for anyone and should take the time to think and reflect on their experiences with family and friends, not ranting over a blog. Of a family of nurses and medical personnel, we supervised the care of a close family member with lymphoma. It was very sudden onset. She went from living in her home, completely independent of her personal care, paying bills, medication administration, going to the store and beauty shop on her own at age 90. No concurrent chronic illnesses like heart disease or COPD, renal or hepatic failure. She had a couple bouts of sepsis, did a CT and found the source of sepsis and also the cancer.

We continued to live everyday as a gift from God, not angry at God or others for this occurrence. We didn't think it would be so progressive. Prior to Hospice care, she was in severe pain, couldn't eat much or drink much even at our requests, it was simply the disease process. Hospice provided extra care because we couldn't do it all by ourselves. They helped us prepare for the end even though it was weeks away and helped to keep her in comfort without heavy medication and sedation from her own decision. What a stoic woman.

I often thought about providing fluids or nutrition parenterally, however, it would have not been of benefit. Even though she hadn't any prior liver or kidney problems, the disease and dying stages cause organs to shut down and can last several weeks.

Watching a disease process and dying process is difficult when you are young like myself, and when you are at any stage of life. It is different for everyone. It can be very emotional and difficult to digest the situation and people need time to grieve. Physcial death is a natural occurrence and people should be reminded of that. Spiritual life continues and we will see our loved ones again. Acceptance is the final stage of grief, and in time we all must learn to accept this loss. It cannot be changed.

If you suspect something a mercy killing or euthenasia (which hospice care is not), then it should be investigated and have access to that documentation if necessary. However, one should not blame or accuse others without proper information and emotional composure.
Bill
2 years ago
this hospice organization is nothing more then a euthanasia organization,
my wife was brought home from the hospital with stable breathing and and respiration,
the hospice nurse arrived at 7pm, and by 4am my wife was dead, think it over many times before allowing these people into your home.
Erin Hamel
2 years ago
I agree with Stace... Hospice just killed my father. Same way.. with Ativan and Morphine. He was not terminal, in the sense that he may have had up to about three years to live according to his cardiologist. A family member called in Hospice and as soon as they got there they started pumping him with pain meds. And then faster and faster. He believed they were there to take care of him like regular nurses would do... It is so sad. Be very careful bringing in Hospice to your home like my family did, or putting your loved one in a Hospice. They will kill your loved one.. it's their job... God help these people who do this killing...
eileen chmielewski
2 years ago
It has been 5 monthes since I lost my Mom last 3 days in hospice care in a catholic hospital. Previous comments from back in June are posted at this site. I was backed to a wall by hospital administration i did not have to accept hopice after 2 weeks od naging and meeting with continuing care staff, but it was down to moving her somewhere out so they could have the bed or inpatinet hospice for 3-5 days. I signed and let them in after an angonizing time with the hospital. My mom had 3 insurances so I know they would be paid but she was old and they wanted her moved. When we talk warmth and comfort the first and most important thing to take away from her was a warming unit called a teddy. Hospice knew she could not keep her body temperature on her own she was 3 weeks with the warming unit it was
removed at and all antibiotics removed and decodron for inflamation removed. she
died in three days. Hospice was writing me each month to remind me how long since her death hoping I would go to greiving sesions sponsore by them. My husband finally caled and told them to stop I would never go to there greving sesions which are for free with hopes down the road you will make a donation to them. I so
wish I would the hospital chaplain that sat in on a meeting we had and questioned me as to what religion had to do with my thoughts on not wanting to remove things from my mom and just let her go as fast as they could. This chaplain
was a good age and with her thoughts on the issue I think she needs to retire and let someone younger do her job she is old and should bow out herself, this seemimingly is her view on when you are old you need not interfer with other lives. I
told this chaplain(nun) that in my catholic religion I was always tought it was in gods hands and a decision for a human to make the time someone is to dye. I have
nightmares and will never get over the way I was treated for just wanting comfort in
the foam I requested a power of attorney. Why have insurance and legal power if all
they want is you out of the hospital if you are old that is thwe bottom line.

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