- Registration / Signin
- Professionals Signin
5 ways to join
- To order Books/Cards/Forms
- Learn Before You Decide
- Cards to complete a Natural Dying—Living Will
- How the Natural Dying Living Will works for religious observers
- Plan Now; Die Later—Ironclad Strategy explained
- NATURAL DYING® FORMS for a Plan Now; Die Later—Ironclad Strategy
- DNR-Registry Medallion
- On-line Store
- Video series: Plan Now, Die Later--Peacefully
- Natural Dying®
- Natural Dying®
- Articles on End of Life Planning The Sooner Mother Dies the Better Palliative Sedation: Pros and Cons
- Slide Presentations:
For general audiences
- Free phone consultation
The Natural Dying® Advance Directive
The Natural Dying® Physician’s Orders
Here is one web page for both forms. Why? Because we believe they should be combined on the same sheet of paper. The Advance Directive provides a legally DURABLE expression of your end—of—life wishes, while the Physician’s Orders has the authority to carry them out.
You can download evaluation copies of both forms by clicking here.
Caring Advocates does not send out useable forms to patients; instead, we ask you for your permission to send useable forms to your physician, with whom we advise you to discuss them. We believe it is just as important to discuss and give your “informed consent” to end—of—life orders as it is to give your informed consent when you will be undergoing surgery.
“The Sooner Mother Dies, The Better” PDF (A story you should read)
- Cease Manual Assistance with Oral Feeding (as ultimately provided by skilled personnel),
- Withhold/withdraw all life—sustaining treatment, and
- Provide the best possible Comfort Care for a peaceful transition.
Why the combined form, Natural Dying Advance Directive and
Completing any Advance Directive requires diligence, however this is especially so with the Advance
Directive to Permit Natural Dying (NDAD) and Natural Dying Physician’s Orders (NDPO). These forms represent a person's final wishes and orders. They will determine the final treatment received. In the past, these decisions have been the most contentious and prone to prolonged litigation. They are also the ones that affect loved ones most deeply.
Natural Dying Physician's Orders
is important for your "ironclad strategy".
Caring Advocates provides useable versions of these forms only to Certified Planning Professionals and physicians. Downloadable forms have a watermark with the words, "Evaluation Copy." The forms are part of an integrated strategic program that includes keeping the forms secure so they will not be implemented too early. Implementing the orders on these forms means the patient is ready to die, so they must be not only completed but also distributed with the upmost care.
Anyone who visits our Caring Advocates website can download an evaluation copy of the forms to Permit Natural Dying. Members of Caring Advocates can request a useable form, which has their Unique Identifying Number (UIN), be sent to their physician. They may also obtain the forms from the Caring Advocates Planning Professional with whom they discuss their wishes prior to visiting their physician.
- Download an evaluation copy of the Natural Dying forms so you can read and think about your options. You may also want to discuss these forms with others you trust, including perhaps, a Caring Advocates Planning Professional.
- Ask Caring Advocates to send a useable copy of the forms—one that has your Caring Advocates Unique Identifying Number (UIN)—to your physician so s/he receives it before your next office visit.
- At that office visit, discuss the Natural Dying forms with your physician and then consent, if you wish.
Click either of these two links to download the forms:
Natural Dying Physician's Orders (NDPO Evaluation copy) PDF
Natural Dying Advance Directive (NDAD Evaluation copy, which is combined with the NDPO, above) PDF
(Note: Clicking on either form will download both.)
1. About myself: I seem not to be self—aware. I cannot recall the fundamental values of my life. I cannot recall or appreciate the significance of important events in my life or of emotionally significant relationships. I have no concept of my future. I am not able to plan ahead;
2. Expressing my wishes and promoting my pleasure and decreasing my pain: I cannot communicate any wishes by using words or gestures. I cannot make sounds or movements to indicate "Yes" or "No" in a consistent way. This incapacity puts me at risk to suffer from a variety of symptoms that others may not recognize and thus not treat, including physical pain and other kinds of suffering;
3. Relating to others: I cannot recognize family members or cherished friends. I seem puzzled or I am wrong in identifying them. I utter no words or sounds, or I make no gestures, as they enter or leave my presence. I am unable to pray to, or relate to a Supreme Being (if I believe in one);
4. Dependency and Dignity: I have become totally dependent on others for my basic care; for example, I cannot bathe or dress myself, and/or I am incontinent of urine and/or feces. My social behavior no longer reflects my life—long values, so I have lost my dignity as I previously defined it;
5. My mood, even with treatment: I rarely express joy or pleasure. I am almost always withdrawn, apathetic, despondent or non—responsive. I am often agitated or seem plagued with fear or horror;
6. Burdens versus effectiveness: Maintaining my existence requires almost constant care or intensive medical treatment, and will not be effective to provide improvement or to benefit to my quality of life so that I can live outside an institution or without such treatment or care;
7. Burdens versus benefits: I do not want to prolong the dying of my biologic body if I cannot appreciate any benefit while the burdens to my loved ones require great sacrifices, which may include: depleting my and/or their finances, diverting their attention from other important activities and responsibilities, and causing them to suffer from physical exhaustion or mental depression;
8. Regarding food and fluid: I do not want medically—administered nutrition and hydration, even if there is a risk of contracting pneumonia by aspirating into my lungs what others put into my mouth. After I have lost the mental ability to know how to eat and to drink, I do not want manual assistance IF I seem to have lost enjoyment from tasting and chewing so that it has become necessary to place pureed food at the back of my tongue to initiate a swallowing reflex, OR my actions indicate I am reluctant to eat, OR my trusted physician (AND my proxy, if authorized) believes that I meet a sufficient number of the other seven Criteria of Advanced Dementia to Consider Natural Dying.
© 2009 Stanley A. Terman, Ph.D., M.D. DrTerman@gmail.com
Palliative Sedation: Pros and Cons
Except for people who hold the devout belief that God is the author of their lives and that suffering is necessary for redemption to enter Heaven, no one wants to endure unbearable pain and suffering as his/her life ends. Instead, we prefer whatever treatment is necessary to avoid unbearable pain and suffering. How can we do that? One way is "hope." We can hope that our last physician will be compassionate so that s/he will give us enough medication to provide relief—even if we require sedation to unconsciousness—a legal, respected method of Comfort Care called "sedation to unconsciousness" or "Palliative Sedation."
Unfortunately, according to a 2007 survey by Curlin et al. Religion, conscience, and controversial clinical practices. N Engl J Med 356: 593-600), about one in six physicians will not provide Palliative Sedation because of his/her personal moral or religious beliefs. Worse, about half of objecting physicians also do not feel obligated to refer their suffering patients to other physicians who will provide Palliative Sedation for such relief—even though the laws in most States require them to do so. Worst, by the time a patient experiences such end-of-life pain and suffering, it is too late to find another physician. Not only will the patient not have enough energy, it is unlikely that s/he will still be mentally competent to consent to any medical treatment.
Some physicians will agree to treat unbearable physical discomfort but not mental anguish or “existential” suffering. The American Medical Association Council on Ethical and Judicial Affairs “concur[red] with those who argue that existential suffering… is not an appropriate indication for treatment with palliative sedation to unconsciousness, because the causes of this type of suffering are better addressed by other interventions…” Their recommendation: “Enlist the support of the patient’s broader social and spiritual network in order to address issues, which are beyond the scope of clinical care.” (Levine MA. Sedation to Unconsciousness in End-of-Life Care. CEJA Report 5-A-08. www.ama-assn.org/ama1/pub/upload/mm/369/ceja_5a08.pdf) Bottom line: Your future physician can diagnose your suffering as “existential,” but (in the opinion of AMA’s committee) should not treat you—since it is “beyond the scope of clinical care”—even if psycho-social and pastoral-spiritual counseling fail to relieve your endless, unbearable suffering. Many professionals disagree. Some favor instead the “whole person” view of suffering and consider it not clinically possible to distinguish one type of suffering from another. (For example: Cassell J, Rich BA. Intractable End-of-Life Suffering and the Ethics of Palliative Sedation. Pain Medicine 2010; 11: 435–438.)
The Natural Dying Physician's Orders includes these words (in itsOrder #2): "Attached: Consent Form to Relieve Unbearable Suffering by PALLIATIVE SEDATION." It also has places for the signatures of patient and he physician near t the bottom of the page. They indicate the physician and patient had a discussion in which the physician informed the patient of his/her treatment options, and that after this discussion the patient gave his/her consent for Palliative Sedation. So... if a competent patient brings the Consent Form and the Natural Dying Physician's Orders to a physician but the physician objects when asked to sign, it will not be too late for the patient to find another physician. Cooperative physicians will both sign and discuss various options with their patients if they have questions as they complete the Consent Form to Relieve Unbearable Suffering by PALLIATIVE SEDATION. Here are a few examples:
Many of my older patients feel they have already enjoyed a full life and have a low tolerance for pain. So they prefer NO severe pain and suffering before they die.
In contrast, (as of 2011) I feel differently. I instructed my future physicians to give me at least one chance to wake up, even if I might experience some pain and suffering for a short while. Why? Because what I believe being is conscious is what makes life precious. The beginning of Palliative Sedation could be the end of my conscious life. If I have unbearable pain and suffering, I certainly want to start Palliative Sedation but after a few days, I want my physician to reduce the dose of medication to see if I can enjoy a bit more of conscious life. Some patients can after a total rest for a few days. The name for such a request is"Respite Sedation." Dr. Paul Rousseau coined this term and he extensively wrote about it. (Rousseau PC. (2002). Existential suffering and palliative sedation in terminal illness. Prog. Pall. Care 10: 222-224; (2003). Palliative Sedation and Sleeping Before Death: A Need for Clinical Guidelines? J Pall. Med. 6: 425- 427. (2004). Palliative sedation in the management of refractory symptoms. J. Supportive Oncology 2: 181-186.)
I also want to indicate the precise point I would want pain and symptom relief at the expense of consciousness. If I have already had sufficient time to say my goodbyes to my loved ones and reminisce with them, then—if I am terminally ill—having a brief return of consciousness before I die would be less important. But if an important relative is still on route, traveling to see me one last time, then I would want to reduce the dose of medication so I can wake up when s/he arrives. On the other hand, if I am suffering from dementia and it has been months or years since I had the mental ability to recognize my loved ones and to communicate in any way, then I see absolutely no reason to reduce the dose of medication. I would be able only to experience pain and suffering while receiving no benefit from being conscious.
To me, all this sounds eminently reasonable. Even obvious. Yet there are people re so afraid of Palliative Sedation that they don't want the general public even to know this option exists. Two examples: In order to pass the "Terminally Ill Patients' Right to Know Act" (AB 2747) in California in 2008, the words, "Palliative Sedation," had to be struck from the bill as originally proposed. When a similar bill was later introduced in the State of New York, its advocates decided not to be specific.
What underlies people's fear of Palliative Sedation? This method of providing Comfort Care could possibly be abused by physicians to hasten patients' dying. Actually, such a fear is not merely theoretical. In September, 2009, a report was published in the British newspaper, The Telegraph, with an alarming title that referred to the UK's National Health Service: "Sentenced to death on the NHS: Patients with terminal illnesses are being made to die prematurely under an NHS scheme to help end their lives, leading doctors have warned." Called the Liverpool Care Pathway because the protocol was initially developed to help relieve the suffering of terminal cancer patients in a famous Liverpool hospice, its adoption became more widespread after UK's National Institute for Health and Clinical Excellence approved the protocol in 2004. The article cited one fact: 16.5% of patients died while receiving deep, continuous sedation. The article then went to quote medical experts who speculated that some patients may have been sedated before necessary and that continuous sedation may have made it impossible for physicians to notice any signs of recovery. To explain: I use the word "speculated" because no proof was offered that either scenario actually took place.
What evidence was there for overuse or misuse of the Liverpool Protocol? Reporters compared the percentage of UK patients who died while receiving deep, continuous sedation with the percentage of patients in other countries. As stated, the UK figure was 16.5%--a figure twice that of Belgium and the Netherlands. Yet the researchers and reporters failed to put this number in context by considering other ways that patients can die in the other two countries. Certainly, it is no secret that in these countries, both Physician—Assisted Suicide and Euthanasia are permitted. One could still argue that the percentage of patients receiving deep continuous sedation is relatively high. Miccinesi and colleagues examined 20,480 death certificates in six European nations and reported in 2006 that the percentage of patients who received continuous deep sedation ranged from 2.5% (Denmark) to 8.5% (Italy). Still, we cannot assume that this retrospective study accurately reflects what really went on. For example, there might be important differences in the standards of reporting data on death certificates among different countries. Recently, in what is likely the first prospective study of Palliative Sedation, the percentage of those who received deep, continuous sedation was 5.9% in several Italian hospices, according to Maltoni and colleagues, 2009.
Even if we assume that 16.5% in the UK is really higher than the practice in other European nations, we cannot assume that physicians in the UK overused or misused Palliative Sedation because the percentage of patients who have unbearable pain and suffering at the end of life also has an extremely wide variation, depending much on what kinds of patients were included in the researchers' surveys.
Before I present any more numbers, consider this brief classic story for some perspective:
- A man lost his wallet. As he frantically searched for it under a street lamp, a friend happened to pass by and offered to help. After several frustrating minutes, the friend asked, "So you lost your wallet right around here?" As he pointed, the man said, "No, I lost it somewhere over there." Puzzled, the friend asked, "So why are you looking here?" The man answered, "Because the light is better here."
Comparing percentages among countries is likely another case of the "light is better." Here is what really counts: Did the treatment fit the symptom? Once again, we have a problem with researchers using different definitions. The best definition of "refractory symptom" (for which Palliative Sedation would be considered appropriate) was delineated by Drs. Cherny and Portenoy in 1994: "A symptom for which all possible treatment has failed, or it is estimated that no methods are available for palliation within the time frame and the risk—benefit ratio that the patient can tolerate." In their 2000 position paper entitled, "Responding to Intractable Terminal Suffering," Drs. Quill and Byock reviewed 13 survey articles and concluded that "between 5% and 35% of patients in hospice programs describe their pain as 'severe' in the last week of life and that 25% describe their shortness of breath as 'unbearable.'"
Taking the average of these numbers, 5%, 35%, and 25%, would yield an estimate of just over 20% of patients who might need Palliative Sedation. I make no claim for this figure being accurate. I only note that, if it happens to be in the right range, then the Liverpool Care Pathway would be treating patients far more appropriately, while the other European countries would be under—treating patients for their pain and suffering. —This is the very opposite conclusion to what The Telegraph reported.
By far, the greatest fear about Palliative Sedation, among physicians and the general public—especially the devoutly religious and those people who have disabilities—is that Palliative Sedation might hasten death. (Again let me state my personal greatest fear: it is the end of conscious life, not of biologic death.) Maltoni and his colleagues (2009) cited nine articles that "attest, directly or indirectly, to the absence of an impact of palliative sedation on survival duration." Maltoni's own research report was the first prospective study to examine overall survival directly. Their study combined mild and intermittent sedation as well as deep, continuous sedation; however it is continuous deep sedation that is most relevant. Their published report included data only for all groups of sedated patients so I wrote to Dr. Marco Maltoni for further details and then I received his permission to quote these unpublished data (in his words):
- "The median survival of the 63 patients who received continuous deep sedation was 8 days (95% CI 5-11, range 0-62). The median survival of the 251 patients who received no sedation was 9 days (95% CI 8-11, range 0-331), p=0.169, which indicated that there was no difference in survival due to deep continuous sedation."
If Maltoni's result can be replicated and the figures are representative, then the long-held fear that Palliative Sedation hastens death may someday be classified and accepted as a formerly held myth.
What do you do now?
When it comes down to the treatment you need when your physician visits you at your bedside, the only percentage that really counts is whether you DO (100%) or you do NOT (0%) get the treatment you want. Here's what I recommend: First think about what is important. Is it the very last bit of conscious life? Or complete relief of pain and suffering? Does it depend on other circumstances, such as saying your last goodbyes or your recent mental state? Keep all this in mind as you complete your Consent Form to Relieve Unbearable Suffering by PALLIATIVE SEDATION. Discuss the fine points with your physician and then you both sign your Natural Dying Physician's Orders. Even if this physician is not your "last" physician who attends to your medical treatment many years from now, the details of your informed consent will be known and thus likely to be honored, especially because they will be consistent with your durable Advance Directive/Natural Dying—Living Will (item 6.6).
On a societal scale, I would propose recommending a forced decision: REQUIRE every patient engaged in Advance Care Planning to decide either to consent, or to refuse to consent, to receive Palliative Sedation (if needed). I make this recommendation for two compelling reasons: Patients who consent can explain exactly what kind of treatment they want and WHEN. Patients who do not consent can feel more secure that a new protocol, like the one that started in Liverpool in the UK, will not presume that they want Palliative Sedation. That is the purpose of Advance Care Planning: to tell your future decision-makers what you DO or do NOT want.
Finally, if you are legally designated as someone's proxy/agent, keep in mind what you've learned by reading this article—if a physician asks you to make a decision. Remember the appropriate decision is what the patient would have made for him/herself—not what you would have made for yourself. This is what clinicians call "Substituted Judgment."
To conclude on a practical note, realize that about some things, we have no choice. Someday, like all others before us, our lives will end. The best we can do in the meantime is to plan so that it is as peaceful as possible—for ourselves and our loved ones.