Hospice and Palliative Care Medicine (HPM) is a medical specialty recognized by the American Board of Medical Specialties since 2006. Over the past decade, approximately 7,570 physicians have been certified in this field of clinical expertise. We treat patients experiencing distress due to diseases that may threaten their very lives and that certainly burden them with symptoms that cause suffering ranging from minimal to severe. Our attention is focused on caring for the needs of both patients and their families. While most hospice patients face death within six months to a year, most palliative care patients have chronic life-threatening diseases, but still have viable treatment options offering them many more years of life.
Palliative Care and Hospice: Different Approaches for Very Different Patients
Unfortunately, many bioethicists have framed both palliative care and hospice care as ‘end-of-life’ care and this term has become commonly accepted. The specialty’s name, Hospice and Palliative Care Medicine, and current practice reinforce this public view (also shared by many physicians) of a single approach to the treatment of two very different kinds of patients. This is quite misleading and especially dangerous today, at a time when hospice care and palliative care both are liable to be misused as means to limit treatment and/or hasten death in order to help rein in healthcare costs.
Palliative care patients and hospice patients have different treatment needs and goals. In palliative care, the HPM specialist’s approach is to help the patient live well with their disease as it is being treated. In hospice care, the approach is to help the patient who is dying from a progressive, untreatable disease by alleviating painful and bothersome symptoms.
Patients with newly diagnosed cancer, heart failure, or early dementia, are excellent candidates for palliative care. Here, we focus on easing the patient’s symptoms—pain, depression, constipation, loss of appetite, etc.—while they are receiving treatment for their primary disease. Cancer treatment, for example, may extend the life of a patient and, with expert palliative care, their general well-being is vastly improved. This is clearly not ‘end-of-life’ care.
On the other hand, hospice patients, by their own choice, have decided to forgo further treatment for their underlying diseases once it is no longer consistent with their goals and values. They have determined to live out the remainder of their lives focusing on important relationships with family and friends, yet desire to be comfortable, relieved of suffering from their progressive diseases. Hospice care includes relieving pain caused by a spreading cancer, improving breathing when it is impaired due to heart failure or lung disease progression, etc.
The Origins of Hospice and Palliative Care
Hospice is an historical term that once referred to a place of rest for pilgrims journeying from one place to the next. Today, hospice incorporates this notion of traveling, but refers to the journey or experience of dying. Dame Cicely Saunders is credited with establishing the first modern hospice in 1967 and ushering in the modern hospice movement as a holistic approach to this experience of dying. Hospice’s focus is not on the underlying disease state, but on the dis-ease caused by pain and other sufferings—physical, spiritual, psychological, and even intellectual. Therefore, good hospice care involves a team approach of care givers trained in these domains. Dying is recognized as a communal event involving family, care givers, and community. Good hospice care includes a restoration of the human experience of dying and death, minimizing the technological focus on disease treatment while expertly treating the symptoms that cause patients and families distress. Good hospice care prepares the person for death and allows it to occur naturally, never hastening it nor proposing death as a treatment for the suffering person.
Palliative care has always been a part of the practice of general medicine. The origin of this word is from the Latin palliare, to ‘cover with a cloak.’ Palliative care expertly alleviates (cloaks) the patient’s symptoms, easing their suffering both from their illness and its treatment. Studies of the effectiveness of palliative care are beginning to demonstrate improved quality of overall patient care. One important study published in the New England Journal of Medicine, August 2010, reported that, among patients with metastatic non-small cell lung cancer (the leading cause of cancer deaths worldwide), early involvement of palliative care led to significant mood improvements in patients and, most importantly, the patients treated with palliative care along with their cancer chemotherapy had experienced longer survival.
The Physician’s Traditional Ethics
Physicians, until more recent times, have been guided by the ideal of never harming patients and always promoting the good for individuals in their care. The public has relied upon this approach in times of life’s medical emergencies. In this way, trust in doctors and the medical profession was justly earned. Life, itself, was viewed as a great good, even life plagued by difficulties. In their dealings with patients, physicians strove to help cure them of their diseases and always to care for them because of the underlying reverence for human life and the goodness of life. Taking a life, for whatever reason, was always taboo—that is, intentionally ending a life was viewed as counter to the physician’s twofold oath to “do good” and “never to do harm.”
Profound respect for the sanctity of life has always been the core principle of medicine. Is Hospice and Palliative Care Medicine losing its soul?
The New Bioethics: A Seismic Shift from the Sanctity of Life Ethic
Today, sadly, there are changes being brought about by many elite academicians, including physicians, philosophers and lawyers, who profess that only certain lives are good or worth saving; that only certain lives possess value or usefulness. What doctors once were trained to think of as an unassailable good—protection of every human life entrusted to their care—is rejected by utilitarian-minded bioethicists.
In a clear rejection of the sanctity of life ethic, the new bioethics presents us with a quality of life approach that divides human life into two categories: those who are “wanted” and those who are “unwanted.” Like their brothers and sisters who are aborted at the beginning of their lives, the chronically ill, disabled, elderly, and mentally ill are seen as nuisances, sometimes even to themselves. The new bioethics has convinced many that the real kindness is to kill. Society is informed that, when applied to certain people, “do no harm” implies further life is harmful and, therefore, killing them is beneficent. In the Netherlands, for instance, where euthanasia is legal, approximately 5% of deaths are brought about by lethal injection or some other deadly medical means. Many of the euthanized victims had a treatable mental illness such as depression. In America, instances of ‘stealth euthanasia’ have been documented. One way to accomplish ‘stealth euthanasia’ is to administer intentionally larger doses of analgesia, beyond what is necessary to diminish pain, in order to end patients’ lives. In fact, this is not a secret within the medical profession.
In September of 2000, the World Federation of Right to Die Societies (an association of organizations which promote euthanasia throughout the world) issued a declaration, stating in part:
We wish to draw public attention to the practice of “terminal sedation” or “slow euthanasia” which is performed extensively today…A physician may lawfully administer increasing dosages of regular analgesic and sedating drugs that can hasten someone’s death as long as the declared intention is to ease pain and suffering…Compassionate physicians, without publicly declaring the true intention of their actions, often speed up the dying process in this way. [Emphasis added.]
The arguments used to justify killing patients encompass a seismic shift in medical ethics. Notice what is happening here: the medical profession (and society, too) is slowly turning away from the traditional sanctity of life ethic toward an arbitrary quality of life ethic.
Palliative care is increasingly being used as a tool in this new bioethics. Palliative care can be misused to deny needed disease-specific treatment in order to eliminate “unwanted” people and reduce healthcare costs.
Guardrails for Good Medical Care in Hospice and Palliative Care
Where are the guardrails for good medical care in hospice and palliative care? They begin and end with physicians’ commitment to treat individual patients according to their needs and the rejection of becoming agents of the government or other third parties interested in goals such as cutting costs and preserving resources, goals that are not directly related to individual patient care. Physicians should be committed to doing the very best for each patient they encounter and directing patient care in cooperation with their patients. This traditional approach was and is based on recognizing the equal moral worth of every human life.
Ralph A. Capone, MD, FACP, is board-certified in Hospice and Palliative Care Medicine and Internal Medicine. Dr. Capone teaches Catholic Bioethics at St Vincent College in Latrobe, PA.