Let me be very clear from the start: the question of wanting either of these interventions was never an issue for John when he filled out his Living Will. My many years of hospice experience had made the choice a non-issue for both of us. I’d been a part of many medical discussions over the years on this subject, and had never heard any convincing arguments in favor of either.
A number of years ago, I participated in an excellent and compelling national teleconference for doctors and nurses on tube feeding sponsored by the Robert Woods Johnson Foundation, which presented some very strong, well-researched arguments against this practice. Plus, I had actual personal experience with two end-stage patients with feeding tubes, both of whom were clearly experiencing suffering as a result of those tubes and both of whom wanted them taken out— more on that later.
There has been quite a thoughtful discussion on the colon cancer forum recently on this topic, revealing some fundamental misunderstandings on the part of some of the participants— which is the inspiration for this entry. My goal was to examine once more whether there were any reasons at all why one might want to choose either IV hydration or tube feeding at the end of life.
Please keep in mind that this discussion applies only to cancer patients who are in the process of filling out a living will; the presumption is that the patient is terminally ill with days to live and is no longer able to advocate for themselves.
Fundamental to any consideration of these issues is understanding this key point in advance:
When someone with a serious life-limiting illness is no longer able to eat or drink it usually means that the body is beginning to stop functioning. It is important to remember that the person’s body is beginning to shut down because of the disease and dying process, not because of the absence of food and liquid.
Other key points highlighted by the National Hospice and Palliative Care website which most non-medical people are unaware of:
1. In order to make an informed decision about artificial nutrition and hydration at the end of life, it is essential to understand how the body processes food and fluids. (see points below)
2. Artificial nutrition and hydration do not offer the comforts that come from the taste and texture of food and liquids. Doctors and nurses control when and how much will be given rather than the person.
3. Providing artificial nutrition and hydration requires technical skill and has many serious risks. Professional skill and training are necessary to make decisions about how much and what type of nutritional formula to give, how much IV fluid is appropriate, and to monitor for side effects.
After a thorough search of the Web, the information I found was easy to categorize: 1. reasons for and 2. reasons against. There was vastly more published information on the latter category, so I’ll start with that.
ARGUMENTS IN FAVOR OF OPTING OUT OF IV HYDRATION AT THE END OF LIFE:
1. Fluid build-up in the lungs is common at the end of life. When the body is beginning to shut down and IV fluids are administered, the body struggles to eliminate the excess fluid, resulting in more discomfort.
No IV means less fluid in the lungs, which makes it easier to breathe, with less breathlessness (which creates great anxiety) and less coughing (which is exhausting and often painful for the patient).
2. When the body’s elimination system begins to slow, IV fluid tends to build up in the tissues, potentially exacerbating pressure around tumors. Less pressure around tumors means less pain.
3. If the kidneys are still functioning, the excess fluid from IV hydration will be peed out, increasing the incidence of bedsores from damp skin and necessitating constant re-positioning of the patient in order to change bedclothes. Frequent urination when the patient can no longer get to the toilet or commode could necessitate the insertion of a catheter, which can be quite uncomfortable and a source of infection.
4. Fluid build-up in hands and feet and in body in general is less without IV hydration.
5. There is a natural release of pain-relieving chemical as the body dehydrates. When the body no longer takes in food, appetite is dampened and a sense of well-being occurs. Anyone who has ever fasted for health reasons knows about this.
6. With dehydration, GI fluids decrease, limiting nausea and vomiting.
7. IV hydration and tube feeding can cause considerable discomfort for the patient.
My first personal experience with this was with a 20-something year old with advanced cerebral palsy in a long-term care facility. Although technically not a hospice patient (because her parents refused to accept that she was dying and wanted EVERYTHING done to keep her alive) the distraught staff begged our hospice director to send a volunteer to sit with the patient.
The patient clearly did not want any of these uncomfortable tubes, as evidenced by the fact that she pulled them out herself multiple times each day, her face a mask of pain and anguish. She could not speak and could not advocate for herself; her parents controlled her circumstances and demanded standing orders that the nurses were to re-insert the tubes each time their daughter pulled them out.
My task was to sit by her bedside and do my best to try to get her to express her wishes in a clear way so that the nursing staff and doctor could document for the hospital ethics committee that the patient wanted the tubes taken out. I was never able to do that, despite the fact that all of us could clearly see the truth of her situation. She died a very agonized death several weeks later.
My second experience was with an elderly hospice patient with a very long list of life-threatening bodily failures, whose loving daughters had been talked into inserting a feeding tube her mother did not want by a misguided hospital doctor who assured them in would be in their mother’s best interests. The patient had lost the ability to speak and more recently, the ability to eat without choking. She put up with tube-feeding for several weeks, then made it very clear to her daughters that she wanted it out (it was causing all kinds of distressing problems). I was with her on several occasions when she was receiving a tube-feeding and can attest that it was NOT a pleasant experience for her; it was very stressful for the daughter who was in charge of administering it and that stress transferred over to the patient. The experience was the antithesis of comforting for both. The tube was removed and she died very peacefully about a week later.
8. Studies show that most actively dying patients DO NOT experience hunger even if they are eating very little. Here are the conclusions of one representative study published in JAMA:
In this series, patients terminally ill with cancer generally did not experience hunger and those who did needed only small amounts of food for alleviation. Complaints of thirst and dry mouth were relieved with mouth care and sips of liquids far less than that needed to prevent dehydration. Food and fluid administration beyond the specific requests of patients may play a minimal role in providing comfort to terminally ill patients.
9. Hank Dunn, a chaplain to terminally ill patients since 1983, in his book Hard Choices For Loving People, makes the following statement, backed up by 20 reference studies, meticulously documented:
“The medical evidence is quite clear that dehydration in the end stage of a terminal illness is a very natural and compassionate way to die.”
If your goal is to die at home and you think that you want IV hydration and/or a feeding tube, please consider whether your local hospice organization will support you in this— many will not, unless there is a clear and compelling medical need.
Consider that you will have to go to a hospital to have a feeding tube inserted—this is a surgical procedure, NOT something that is done in the home.
If you actually find a hospice that will accept you with these interventions in place, ask yourself if your family is mentally prepared to do the hands-on care required for these devices—
The responsibility for maintaining venous access sites and IV supplies may be overwhelming for caregivers and it will be largely the family’s responsibility, not the hospice nurse’s.
ARGUMENTS USED IN SUPPORT OF IV HYDRATION AND/OR TUBE FEEDING AT THE END OF LIFE:
1. Dying patients are more comfortable with these interventions.
Please see above for 9 explanations of why this is not likely. Ask yourself: if dying patients are more comfortable with these tubes in place, why is it so common that these same patients pull the tubes out repeatedly?
As in the cases mentioned above, will the caregivers be more comfortable with these interventions, if they themselves are going to have to be responsible for maintaining them? If not, won’t their discomfort be ultimately communicated to the patient , thereby diminishing the possibility of a peaceful death?
2. Dehydration can cause confusion, restlessness and neuromuscular irritability.
These symptoms are common in the dying patient, whether they are receiving IV hydration or not.
3. Dehydration is a painful way to die.
See above #8 and #9. Proponents of this argument use the phrase “dying from dehydration”, which is very misleading. In the circumstances we are considering here, we are talking about cancer patients whose illness has progressed to the point of causing complications leading to death– dehydration is not going to be the cause of their death.
Patients have asked me, “I’ve heard doctors and nurses say that dehydration as you are dying is not uncomfortable– but how do they know this for sure?” My response comes directly out of sitting at the bedside of dying patients for 26 years. Anyone who is experienced in being with the dying knows that patients show a wide range of facial expressions that indicate pain or discomfort– or peaceful relaxation. Patients tell us how they feel, in a very clear way, via facial expressions.
Furthermore, even though a dying person may not be able to talk, they are almost always–even when in a coma-like state– able to communicate clearly about whether they would like to have dryness of their mouth attended to. When offered oral mouth care with moistened mini-sponges or sips of water/ice chips, they will either open their mouth or clamp it tightly closed. Any nurse, doctor or volunteer who has had experience with dying patients knows this well.
4. Family members (and patients themselves) may be fearful of “starving to death”.
See #8. There is a world of difference between dying patients who have ceased to eat because their body is shutting down and healthy individuals who are suddenly cut off from food (as in a famine). The latter will eat whatever they can find, intermittently and usually do not stop eating altogether. It is this intermittent consumption of low-grade food that causes the sensation of starving to death. Again, the terminally ill cancer patient is dying from cancer and its complications, not from “starving to death”.
5. Dehydration causes “terminal delirium”.
While it is true that dehydration may cause symptoms of delirium in healthy individuals, what is sometimes termed “delirium” in dying patients is far more complex than simply a lack of fluid. In fact, this terminology is often grossly misused and is a consequence of a lack of understanding on the part of medical personnel or inexperienced hospice professionals.
I could write volumes on this, but suggest instead that interested readers check out one of the best books on the subject of communication at the end of life: Final Passages, by Maggie Callanan. Profound messages from one who is dying are often phrased in very symbolic ways; it is a great tragedy when such messages are not examined carefully and consequently brushed off as indicative of a “delirium” that needs to be treated with medical interventions.
There is a time and a place for IV hydration in the terminally ill, but that time is generally not in the last few days of life. Each circumstance must be considered on an individual basis. But as I pointed out earlier, it will be very difficult to come to an informed decision about what you want at the end of your life if you have not reached an understanding about the many factors that shape that decision. Each of us will come to different conclusions, based on our own unique life circumstances.
My sources for much of this information:
Dying Well: http://www.dyingwell.org/prnh.htm
I sincerely hope that this has helped those who read it to understand some of the variables in the difficult end-of life decision-making process. May all of us live and die in peace, in the way that is best for us.
Shedding Light On The Cancer Journey is now in E-book format, readable on your PC/Mac, Ipad, Android, Blackberry or Kindle. If you would like to learn more about other end-of-life issues such as :
- how to choose a truly excellent hospice,
- differences between palliative care and hospice care,
- troubleshooting pain control issues,
- the decision about when to stop chemo,
- and the myriad of other considerations of cancer patients and their loved ones that most doctors never discuss
Shedding Light On The Cancer Journey is available on Amazon: http://www.amazon.com/dp/B004T3331M
The author speaks from 25 years of experience at the bedside of dying patients, as a trainer of new hospice volunteers in the area of contemplative care, from first-hand experience with palliative care in the home when her husband was dying, and from having successfully transformed several non-functional aspects of her HMO for the benefit of all future cancer patients.
Shedding Light On The Cancer Journey is a not-for-profit labor of love.