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Keywords:

  • end-of life care;
  • termination of treatment;
  • advance directives;
  • bioethics

Abstract

  1. Top of page
  2. Abstract
  3. Fruitful Collaboration
  4. The Consensus Around End-of-life Care
  5. What, If Anything, Needs to Be Done to Fix Existing Protections for Those Who Cannot Speak for Themselves?
  6. The Protections of Liberty and Privacy
  7. Turning to Families and Friends in the Face of Lost Capacity
  8. Lessons From the Schiavo Case Regarding the Adequacy of Procedural Protections
  9. Are Existing Legal Instruments Used to Express the Wishes of the Incapacitated Sufficient?
  10. REFERENCES

The most important area in which cancer care and bioethics intersect is in the care of the dying. It is in the shift toward according more control to patients, more choice in the setting in which death will come, and in the willingness to take palliative care and comfort care seriously that bioethics has most usefully interacted with cancer care in the past and is likely to continue to do so in the future. Cancer 2008;113(7 suppl):1801–6. © 2008 American Cancer Society.


Fruitful Collaboration

  1. Top of page
  2. Abstract
  3. Fruitful Collaboration
  4. The Consensus Around End-of-life Care
  5. What, If Anything, Needs to Be Done to Fix Existing Protections for Those Who Cannot Speak for Themselves?
  6. The Protections of Liberty and Privacy
  7. Turning to Families and Friends in the Face of Lost Capacity
  8. Lessons From the Schiavo Case Regarding the Adequacy of Procedural Protections
  9. Are Existing Legal Instruments Used to Express the Wishes of the Incapacitated Sufficient?
  10. REFERENCES

There are many ways over the past decades that bioethics has shaped the care of persons with cancer. As genomics has contributed to the early detection of cancer as well as to the detection of those at greatest risk of developing cancer, bioethics has insisted that the only way to ethically use this new knowledge is by creating a system in which patients are properly counseled and informed.1 As efforts proceed to discover more links between genetic and proteomic information and risk factors for cancer and other dreaded diseases through the creation of biobanks, bioethics has tried to formulate policies for the protection of individual rights.2 And as medicine has advanced in the treatment of various forms of cancer, bioethics has insisted that fair access be granted to those in need of expensive care, that conflicts of interest in promoting new cures be minimized, that patients fully understand the nature of the benefits that the latest advances can provide, and that the line between clinical research and therapy be maintained so that those who are being asked to altruistically contribute to the next generation's ability to fight cancer not enter into research with misconceptions or false hope about the purpose behind their enrollment in a study or protocol.3, 4

Historically it could well be argued that the greatest contribution bioethics has ever made to the care of those with cancer is perhaps the simplest: that patients have a right to know their diagnosis and prognosis.5 Knowledge of one's diagnosis and prognosis are so routine today that it is easy to forget that empowering those patients who wish to know about both represents a major change in the norms of cancer care from the 1950s to the present day.5–7 Respect for the patient's autonomy; their right to know, if they wish, what disease they have and what will likely befall them as a result; and the endorsement of this principle both in medicine and the law in the US and many other nations is perhaps the greatest single collaborative engagement between bioethics and medicine.

Nevertheless, despite these many areas of interaction the area that has proven most important and most innovative when cancer care meets bioethics is in the care of the dying. It is in the shift toward according more control to patients, more choice in the setting in which death will come, and in the willingness to take palliative care and comfort care seriously that bioethics has most usefully interacted with cancer care in the past and is likely to continue to usefully interact in the future.

The Consensus Around End-of-life Care

  1. Top of page
  2. Abstract
  3. Fruitful Collaboration
  4. The Consensus Around End-of-life Care
  5. What, If Anything, Needs to Be Done to Fix Existing Protections for Those Who Cannot Speak for Themselves?
  6. The Protections of Liberty and Privacy
  7. Turning to Families and Friends in the Face of Lost Capacity
  8. Lessons From the Schiavo Case Regarding the Adequacy of Procedural Protections
  9. Are Existing Legal Instruments Used to Express the Wishes of the Incapacitated Sufficient?
  10. REFERENCES

The care of cancer patients spawned the single most innovative advance in patient care in the last half of the 20th century—hospice. Although lists of significant achievements in the past 60 years are likely to be crammed with mentions of targeted therapies for cancer, vaccines against cervical cancer, laparoscopic surgery, scanning technologies, bone marrow transplants, and other wondrous and remarkable highly technologic advances, the idea of providing palliative support to cancer patients by specially trained persons in dedicated settings in institutions or homes is, in my view, the single most important evolutionary development in patient ‘care’ that I have seen in my professional career. When Dame Cicely Saunders first applied the term “hospice” to a unit she had created for the specialized care of dying patients in 1967 at St. Christopher's Hospice in London, she had little support and few admirers. However, many in bioethics were quick to endorse her philosophy and to try to build a framework of public policy that would permit its acceptance in medicine and in the law.8 Today hospice has become the gold standard, not just for the care of dying cancer patients but also for the need for palliative care as a part of the care of all patients.

Hospice and the concomitant rise in palliative care that it spawned are most likely the single most important factors in slowing the push to legitimize physician-assisted suicide in the US, Canada, Australia, and Europe. With an aging population and cancer rates likely to continue to increase as a result, it is likely that future skirmishes in the battle to legalize physician-assisted suicide are inevitable. However, the ability to keep suicide (and euthanasia) as absolute last resorts in healthcare will depend on society's willingness and the health profession's commitment to continue to emphasize both hospice and palliative care in the future.9, 10

The fight to empower dying cancer patients produced a consensus regarding end-of-life care that is also in my opinion 1 of the great achievements of both the past 60 years in healthcare and in bioethics—the right of the adult patient to control their medical care regardless of whether they are competent to speak. Persons who are competent or once were competent have an absolute right, based on their autonomy and dignity as persons and out of respect for their liberty and privacy, to control their medical care, including all forms of life-sustaining care. Agreement to this consensus concerning the primacy of individual patient control came as a result of numerous battles over the treatment of persons who did not wish to accept standard medical care for life-threatening illnesses such as cancer or even more contentious battles at the bedside and in courtrooms and state legislatures regarding who, if anyone, should have the right to decide to stop or forgo care for those dying of cancer, the acquired immunodeficiency syndrome (AIDS), or other terminal conditions.5, 11–14

The consensus that persons can stop or forgo care, that other persons can speak for them if they know their wishes, and that individuals can write out their wishes as to who should speak for them and how they wish to be treated should they become impaired or permanently unable to communicate was placed under enormous strain by the fight over the fate of Terri Schiavo.15

Terri Schiavo did not have cancer. Nor was she terminally ill. She was a young woman kept alive in a permanent vegetative state by antibiotics, a feeding tube, and expert nursing care. Nevertheless, the national debate over her fate that threatened to tear apart the decades-old consensus, based mainly on the care of persons with cancer, is one worth reflecting on when assessing the future of palliative care and the care of those dying from cancer.

What, If Anything, Needs to Be Done to Fix Existing Protections for Those Who Cannot Speak for Themselves?

  1. Top of page
  2. Abstract
  3. Fruitful Collaboration
  4. The Consensus Around End-of-life Care
  5. What, If Anything, Needs to Be Done to Fix Existing Protections for Those Who Cannot Speak for Themselves?
  6. The Protections of Liberty and Privacy
  7. Turning to Families and Friends in the Face of Lost Capacity
  8. Lessons From the Schiavo Case Regarding the Adequacy of Procedural Protections
  9. Are Existing Legal Instruments Used to Express the Wishes of the Incapacitated Sufficient?
  10. REFERENCES

The question, coming as it does in the wake of the Schiavo case and after legal battles in the state of Florida and the Federal courts, as well as Congress, presumes that something is broken in the existing system of legal protections for those who are unable to communicate their wishes concerning medical treatment and technologies. There are those who argue that the healthcare system is broken and, worse, that there are those in healthcare who do not want to treat Americans with severe disabilities and impairments either because they are biased or because they seek to save money by rushing such persons off to an early grave. These arguments are deeply flawed.16

There is no evidence–none–that any healthcare institution is seeking to end the lives of any American only for reasons of cost. There is no effort under way, after the battle over the fate of Terri Schiavo, to limit or stop care for the thousands of Americans who are now in persistent vegetative states, minimally conscious states, or severely brain–damaged states in nursing homes or hospitals throughout the U.S. Contrary to what was often suggested in the discussion of the Terri Schiavo case, saving money or saving society the cost of her care had absolutely nothing to do with the reasons her feeding tube was removed. The current protections in place for persons such as Ms Schiavo would not allow such a reason to motivate the termination of her treatment. The reason her feeding tube was removed was out of consideration for her choices, her values, and her wishes and for no other reason.15

To understand what the protections are for those who cannot speak for themselves, it is important to distinguish between those who cannot speak for themselves because they have never had the capacity to do so (eg, children and those born with severe and irreversible cognitive deficiencies from birth) and those who were once capable of self-determination and voluntary, informed choice but who can no longer speak for themselves. It is the latter category that drew so much attention in the national debate regarding the case of Terri Schiavo.

I do not believe that the system of protections created by the consensus achieved that individual autonomy must drive all patient care, which has been in place for competent persons as well as those who once could but can no longer, as a result of illness or injury, speak for themselves, is seriously broken or malfunctioning.17 There is a system in place and, despite all the attention that the case of Terri Schiavo generated suggesting otherwise, the consensus has worked well and continues to work well in ensuring that the rights of those to receive or not receive medical treatment consistent with their personal values and choices are respected.14

The Protections of Liberty and Privacy

  1. Top of page
  2. Abstract
  3. Fruitful Collaboration
  4. The Consensus Around End-of-life Care
  5. What, If Anything, Needs to Be Done to Fix Existing Protections for Those Who Cannot Speak for Themselves?
  6. The Protections of Liberty and Privacy
  7. Turning to Families and Friends in the Face of Lost Capacity
  8. Lessons From the Schiavo Case Regarding the Adequacy of Procedural Protections
  9. Are Existing Legal Instruments Used to Express the Wishes of the Incapacitated Sufficient?
  10. REFERENCES

The most important protection that each American has when it comes to medical care is that it is our individual decision as to what we do or do not want to accept. No one has the right to force us to be a patient. No one has the right to administer any form of intervention, be it a pill, a feeding tube, a cold compress, a blood transfusion, a nicotine patch, or any other form of medical care and treatment, if I, as a competent person who is informed about my options, say ‘no.’ The adult Jehovah's Witness can refuse a blood transfusion even it means certain death and leaving behind children, family, and friends. The Christian Scientist may pray instead of entering a hospital. The adult person who does not believe in Western medicine may forgo it. The person who does not want to undergo 1 more round of chemotherapy may say ‘enough.’ And those who say ‘I do not choose to live a life that can only be maintained by medical means’ can say ‘no,’ even if their death will inevitably follow that refusal.

Nor do we lose that right when we cannot communicate. The optimal means of securing this right is to either write down our wishes in the form of advance directives or to designate someone to choose for us (ie, durable medical powers of attorney). However, many people do not do either of these things because they cannot afford a lawyer; do not want to think in advance about topics that frighten them; worry that they may actually bring about their death if they consider such matters; or, as in the case of young people such as Terri Schiavo, Nancy Cruzan, or Karen Ann Quinlan, simply do not view writing out directives about their death as a pressing concern. They still, however, have the right to control their care.

This need to protect liberty and privacy when it comes to medical care triggers the procedural protection long in place for those who can no longer speak for themselves. Their family or those they have lived with most intimately can and should exercise their autonomy for them.

Family members can best express the values and wishes of their loved ones concerning medical care. Those family members who know the person best can best say what that person would have wanted, either on the basis of conversations and discussions or by substituting their judgment about what their loved one would have wanted, knowing their core values and beliefs about medicine and life.

The core ethical value that protects each of us is that no one has the right to make anyone do anything that they do not choose to do when it comes to accepting personal healthcare. This is a fundamental liberty. It is also a fundamental right of privacy. There are no more important values in guiding the relationships that medicine and government should have toward each American then guaranteeing an individual's right to control what third parties may do to them, even in the name of beneficence and the desire to do good.11, 18

Again the key protection of individual rights is not what Congress or a court thinks is best for each person when it comes to healthcare, nor what any particular religious groups, disability groups, disease advocacy groups, or any other organized interest group thinks. It is not even what a medical specialist thinks. What matters and what matters only is what the individual patient thinks.

Turning to Families and Friends in the Face of Lost Capacity

  1. Top of page
  2. Abstract
  3. Fruitful Collaboration
  4. The Consensus Around End-of-life Care
  5. What, If Anything, Needs to Be Done to Fix Existing Protections for Those Who Cannot Speak for Themselves?
  6. The Protections of Liberty and Privacy
  7. Turning to Families and Friends in the Face of Lost Capacity
  8. Lessons From the Schiavo Case Regarding the Adequacy of Procedural Protections
  9. Are Existing Legal Instruments Used to Express the Wishes of the Incapacitated Sufficient?
  10. REFERENCES

The Schiavo case left many in the field of cancer uncertain about where to turn or, more accurately, who to turn to in the face of disagreement concerning the care of a very ill or terminally ill patient. It should not have created this uncertainty.

The place to turn should a person be unable to speak or communicate is to those closest to them. Families should have the authority to decide how best to respect the autonomy, self-determination, and liberty of the once competent but now cognitively incapacitated. And when families do not agree, then it should be spouses or those who are de facto in such a role who should have priority of decision-making authority to act as surrogate decision-makers. If there is no competent spouse, then adult children should have the authority. After children, parents and other relatives have surrogate authority.

This is the exact line of authority that is used in organ and tissue donation under the Uniform Anatomical Gift Act. It is used for the ethical reason that spouses and adult children are presumed to know best the wishes and values and desires of their family members. In medicine in general, whether it is in the emergency room or in the intensive care unit, healthcare providers first turn to spouses to gain guidance regarding what a person would have wanted in the way of medical care.

The privileging of spouses makes sense both ethically and from a standpoint of public policy. These are the people whom those who can no longer communicate chose to be with. They are the people who are most likely to have heard their most recent expressions of values and choices. They are the persons most likely to be most familiar with the choices and values that the person held at the time they lost the ability to communicate.18

Obviously, a spouse, adult child, or parent can be dismissed from the role of surrogate decision-maker. But the burden of proof must fall on those who would so displace them. And the evidence needed to do so must be compelling lest society demonstrate too little regard for the role of a husband or wife.

There is no role for strangers and third parties to try and act as surrogates when families are present. There is no role for Congress or any other institutional third party to try and insert itself into the substantive decision-making process. There is a role for the courts, but that role is best served at the local and state levels in which courts have experience with both local values and family disputes.

Lessons From the Schiavo Case Regarding the Adequacy of Procedural Protections

  1. Top of page
  2. Abstract
  3. Fruitful Collaboration
  4. The Consensus Around End-of-life Care
  5. What, If Anything, Needs to Be Done to Fix Existing Protections for Those Who Cannot Speak for Themselves?
  6. The Protections of Liberty and Privacy
  7. Turning to Families and Friends in the Face of Lost Capacity
  8. Lessons From the Schiavo Case Regarding the Adequacy of Procedural Protections
  9. Are Existing Legal Instruments Used to Express the Wishes of the Incapacitated Sufficient?
  10. REFERENCES

The core system for protecting individual self-determination when the question is starting, stopping, or forgoing medical care relies on liberty and privacy. These values are best protected by close, loving family members. And within families, it is spouses who are best suited to protect the liberty and privacy of their loved ones.

However, there is more of a procedural system than this in place to protect those who once were competent but who can no longer speak for themselves. Over the past 30 years, we have witnessed an amazing and prudent system of procedural protection evolve. Some of these procedural protections were in evidence in the Terri Schiavo case. Others were harder to observe but they are nonetheless present and functioning well.

Doctors, nurses, and healthcare ethics

Every person who is very ill in a hospital will have decisions made for him or her about their care. It is not possible nor is it practical to involve the patient or the family in all of these decisions. Some involve what sort of equipment will be used. Others involve what is available to eat or who it is that will care for you. The protection that patients have, both those who are competent and incompetent, in these areas involves both the legal duties of healthcare workers and institutions as well as professional ethics. Having competent persons assess a patient's status, having hands-on information regarding a patient's prognosis and optimal care, and knowing what the limits are of medical intervention and being willing to move toward palliation as a goal as appropriate are all crucial to protecting the interests and rights of dying and severely and irreversibly ill patients.14

Every one of us, if we die in a hospital or nursing home, will have a decision made not to do something for us. Decisions concerning when to stop cardiopulmonary resuscitation and when to continue must involve decisions by physicians. Ending resuscitation efforts, to take 1 example, is not something that anyone except a physician can decide. A patient or a family might request that everything possible be done, but it is the physician and the hospital that determines possibility and efficacy, not the patient or the family. That is why medical ethics are so very important as a procedural safeguard for patients.

One other professional ethics protection the vulnerable have is the ethics of institutions. In this regard, it is important to state how ethical the institution of hospice is in this country with its commitment to help the terminally ill in an ethical manner. Allegations were made in the heat of the Schiavo case by those who disagreed with the decision to remove her feeding tube that impugned the ethics of the hospice in which she died.15 I defy critics of hospice to demonstrate an instance in which a hospice has let someone die while suffering or in pain. Hospice is one of the greatest achievements of American healthcare within the past 60 years. The ethics of those involved are, as far as the available evidence demonstrates, beyond reproach.

State courts

Perhaps the most visible system of protection on display in the Schiavo case was the state court system. In the case of Terri Schiavo, long before involvement by Congress, the state courts of Florida had carefully and systematically reviewed the evidence, claims, and opinions provided to them by the disputing family members. The state courts of Florida did a superb job of adjudicating a very difficult family dispute. I saw no reason then and still see no reason now to presume that a Federal court or Congress could improve upon the performance of the Florida state courts in the Schiavo case or, for that matter, in any other case. Local and state courts have acquitted themselves with distinction in adjudicating thoughtfully and wisely the very few and exceedingly rare cases that come before them in which families could not agree on a proper course of medical care.

Are Existing Legal Instruments Used to Express the Wishes of the Incapacitated Sufficient?

  1. Top of page
  2. Abstract
  3. Fruitful Collaboration
  4. The Consensus Around End-of-life Care
  5. What, If Anything, Needs to Be Done to Fix Existing Protections for Those Who Cannot Speak for Themselves?
  6. The Protections of Liberty and Privacy
  7. Turning to Families and Friends in the Face of Lost Capacity
  8. Lessons From the Schiavo Case Regarding the Adequacy of Procedural Protections
  9. Are Existing Legal Instruments Used to Express the Wishes of the Incapacitated Sufficient?
  10. REFERENCES

There is evidence to suggest, unfortunately, that advance directives do not prove useful in clinical settings. Often healthcare providers working in cancer and other areas of medicine do not know whether patients have them. Often family members are not aware of their existence. They do not travel well from nursing home to hospital, from hospital to home care, or hospital to hospice. Although some states, such as Florida, have tried to create advance directives that will be seen as binding in other states, it is often not clear how state law applies to those far from their home state. Advance directives are often written in a manner that is too vague to be useful, as when a person designates their ‘family’ to make decisions rather than a particular person. And sometimes physicians simply ignore the documents, more often than not continuing care even when a signed directive requests that this not be done!18

There is work to be done in this area to improve these legal instruments. Having a computerized national registry would be useful. Allowing people to compose durable power of attorneys and advance directives without having to pay lawyers' fees might be helpful. Making sure that every person is given a real chance to fill out such a document in a thoroughly informed manner, for example at the time of entry into the military or when registering to vote, might help.

However, many persons are simply not going to fill these documents out. This should not be the basis for making any presumption regarding what the person might have wanted. In lieu of such a document, it is still best to turn to the closest family member or, in the absence of a family member, closest knowledgeable friend and let them try to articulate the values and choices the once competent but now incapacitated person would have made. Does this approach mean error is possible? It does. However, far more risk of error exists when the law presumes that only 1 answer is possible or that complete strangers can make the best decisions for those who cannot communicate.

The Schiavo case threatened to overturn the ethical consensus forged over 60 years of clinical conversation and moral debate regarding end-of-life care. But it did not. Nor should it have. The consensus that began with the emergence of right to refuse treatment cases and hospice care in the 1950s and 1960s is sound. What needs to be done in the future is to find ways to make its application and implementation in cancer care in particular and healthcare in general more practical, more systematic, and more effective.

REFERENCES

  1. Top of page
  2. Abstract
  3. Fruitful Collaboration
  4. The Consensus Around End-of-life Care
  5. What, If Anything, Needs to Be Done to Fix Existing Protections for Those Who Cannot Speak for Themselves?
  6. The Protections of Liberty and Privacy
  7. Turning to Families and Friends in the Face of Lost Capacity
  8. Lessons From the Schiavo Case Regarding the Adequacy of Procedural Protections
  9. Are Existing Legal Instruments Used to Express the Wishes of the Incapacitated Sufficient?
  10. REFERENCES
  • 1
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    CaplanAL,McCartney,SistiD, eds. The Case of Terri Schiavo. Amherst, NY: Prometheus Books; 2006.
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    Hoeffler JM. Managing Death. Boulder, CO: Westview; 1997.
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    Davis JK. The concept of precedent autonomy. Bioethics. 2002; 16: 114133.
  • 18
    Caplan AL. Smart Mice, Not So Smart People. Lanham, MD: Rowman Littlefield; 2006.