I have just finished all of the modules of the Stanford Palliative Care Training Portal. The home page of the site states:
Our goal is to improve the quality of life for patients and families facing serious illnesses through education of multi-disciplinary doctors, nurses,psychologists, social workers and other allied health personnel. Developed by Stanford eCampus this FREE training portal features learning modules, resources and training materials from internationally recognized leaders in the field of Hospice and Palliative Medicine. We welcome you to join our community.
The site has the following modules that you can work through:
This module will provide a broad overview of death and dying in United States, the growing need for quality palliative care, current gaps in care, present definitions to introduce palliative care, and also discuss the scope of palliative care.One of the ideas we would like to get across is that palliative care is quickly becoming a standard in American health care.
Physicians’ estimates of patient survival, or prognoses, are important to both physicians and patients in all phases of a patient’s life because they inform both medical and non-medical decisions.
At the end of life, these prognoses can become critically important, as they can herald a change from primarily curative or life-prolonging care to primarily supportive or palliative care, a change that clearly impacts clinical and personal decisions.
The irony is that despite its importance, physician prognostication in advanced illness is largely inaccurate and their communication about it is also imperfect. Numerous studies have revealed substantial optimistic bias in the prognoses physicians formulate for their terminally ill cancer patients and additional optimistic bias in the prognoses physicians disclose to these patients. It may be that under-utilization of palliative care at the end of life is related to these prognostic challenges.
This module presents tools for delivering bad news to patients
The three goals of communication in breaking bad news are:
- imparting information
- creating a therapeutic dialogue
- making a realistic plan.
Several opioids are in common use in a palliative care setting. Opioids differ in several ways including their potency, onset, and duration of action. The choice of opioid and the route of delivery is dependent on the specific patient’s situation.
It may be necessary to convert from one opioid to another or to move from one delivery system to another when a patient’s symptoms or location change over the course of therapy.
Dyspnea is a very common symptom among terminally ill patients with or without cancers.
Dyspnea is difficulty in breathing of which the individual is aware. It is a subjective sensation that is difficult to measure and somewhat poorly understood.
This module will identify treatment modalities to improve the patient’s quality of life until a comfortable death occurs.
Many people at the end-of-life are being referred to hospice care too late or not at all. National Hospice Foundation research on end-of-life care found that Americans:
- Are more willing to talk about safe sex and drugs with their children than to discuss end-of-life issues with their terminally ill parents.
- Only 24% of Americans put into writing how they want to be cared for at the end-of-life and 19%, have not thought about end-of-life care at all, while 16% have thought about it, but not told anyone their wishes.
- The National Hospice and Palliative Care Organization (NHPCO) estimate that for every one hospice patient, there are two more who could benefit from hospice services even though the Medicare Hospice Benefit guarantees comprehensive high-quality end-of-life care – at little or no cost – to America’s terminally ill Medicare beneficiaries and their families.
This module will discuss eligibility criteria, disease specific admission criteria, Medicare reimbursement, and death pronouncement for patients who have hospice support for end-of-life care in their home.
“I will tell him, the doctor,
that he must think of something else.
It’s impossible, impossible, to go on like this.”
— Leo Tolstoy, The Death of Ivan Illych
The process of dying is a ubiquitous milestone that allows patients and family members a time of reconciliation, growth, and spiritual enrichment as life enters its final chapter (Rousseau 1999; Cherny 1994). Lamentably, it can also be a time of considerable suffering, precipitating physical and emotional anguish and fomenting desperate and unnecessary requests for physician-assisted death.
Even though symptoms can be adequately managed in most dying patients, suffering in all its domains may be refractory to standard palliative measures. When such suffering occurs, the goals of care are often modified so that the relief of symptoms may prevail over all other considerations, including the maintenance of consciousness. For that reason, when palliative therapies have been exhausted and symptoms remain refractory, palliative sedation is a valuable therapeutic adjunct that affords a more comfortable and dignified death (Rousseau 1999)
Nevertheless, palliative sedation remains somewhat contentious, due to lack of a consistent and universal definition, disparity in clinical use, ethical and moral apprehensions, confusion regarding sedative medications, and a paucity of well-controlled research.
Our stance on the issue of Physician Assisted Death is one of studied neutrality i.e. we are neither for nor against it. However, we are anything but neutral on the issue of the profound suffering seriously ill patients experience. We are deeply cognizant of the fact that some seriously ill patients experience profound distress and refractory symptoms despite maximal palliative care. A few of these patients may approach their trusted clinicians to ask for aid in dying. We want to make sure that all clinicians are skilled at responding gently and thoughtfully to patient requests and alleviate their suffering.
While most seriously ill patients will neither seek nor be eligible for aid in dying, it behooves all providers to listen carefully to the concerns of the patient and family and support them as best as we can. For the few who are eligible to receive lethal medications to hasten their death, this time of their life will likely be a crisis with great physical and emotional suffering. Others will be morally conflicted. Their family members will also experience tremendous stress. They will require support every step of the way. Family members will need help and support after the patient dies.
- Providing care to actively dying patients presents unique challenges for the clinician.
- Patients in their final days require exquisite symptom management.
- Families need ongoing support and coaching as death approaches.
- Care does not end with the death of the patient, but continues through death pronouncement, family notification of the death, discussion of autopsies, and immediate bereavement support.
- Mastering the palliative skills necessary to competently manage an actively dying patient may result in
- A peaceful patient death that is relatively free of discomfort.
- Relieving clinician stress attendant to care for dying patients.
Most people experience “normal grief” with the loss of a loved one. For a small percentage of people experiencing bereavement, intervention can ameliorate health effects including:
- suicidal thoughts,
- substance abuse,
- chronic diseases such as cardiovascular disease, cancer, hypothyroidism and other psychosomatic illnesses.
Assessment and treatment are discussed in the following material.