1. Advance Care Planning
2. Communicating Bad News
3. Whole Patient Assessment
4. Pain Management
5. Assisted Suicide Debate
6. Anxiety, Delirium
7. Goals of Care
8. Sudden Illness
9. Medical Futility
10. Common Symptoms
11. Withholding Treatment
12. Last Hours of Living
13. Cultural Issues
14. Religion, Spirituality
15. Legal Issues
16. Social and Psychological
Clergy and Faith Communities
Step 4: Address the Root Causes of the Request
Step 5: Educate the Patient About Legal Alternatives for Control and Comfort
Step 4: Address the Root Causes of the Request
This section provides a general framework for addressing some of the potential root causes for a request for hastened death in each dimension of suffering
Start by discussing the patient’s health care goals and preferences, explaining palliative care approaches and services, and describing the legal alternatives to PAS
Remember that some patients may not trust either individual health caregivers or the health care system to meet their needs
- This may relate either to:
- It helps to discuss this lack of trust with the patient at the outset, so that the issues can be understood, if not dealt with, early
In order to effectively address the issues that are often the root cause(s) of requests for Physician-Assisted Suicide, physicians should have skills in and knowledge of:
- Withdrawal, withholding treatment
- Aggressive comfort measures
- Palliative care principles
- Local palliative care programs
Addressing Psychological Suffering
As psychosocial suffering leads to many of the requests for physician-assisted suicide or euthanasia, its management warrants considerable attention
As each patient’s emotional response to illness can be profound and coping responses varied, they will require careful exploration in a positive and understanding way
Start by assessing and aggressively managing any:
Consider the need for supportive counseling, which:
- Involves active listening and acknowledgment of the patient’s feelings
- Provided more intensively through dedicated individual or group counseling
Consider using other members of the multidisciplinary team or outside specialists as resources
- Social workers and chaplains trained in supportive counseling can provide considerable assistance
- Referral to trained counselors, psychologists, or psychiatrists may be required if the issues are complex and/or the risks high
Addressing Social Suffering, Practical Concerns
Stresses and conflicts in the social dimension or practical aspects of a person’s life can have profound effects on his or her will to live
Express interest and inquire in detail about this aspect of the patient’s life
Specific areas to address include:
What is the patient’s family situation?
Does he or she live with someone?
Are family members supportive?
Are there unresolved issues?
How is the patient’s financial situation?
Is health insurance available and sufficient?
Are legal affairs in order?
Does the patient have a...
power-of-attorney for health care?
power-of-attorney for business affairs?
last will and testament?
Where would the patient like to receive care?
Who is there to help?
Who will the caregivers be?
Is there tension over the caregiving role for either party?
Who attends to domestic chores such as...
Are there any dependents the patient cares for, or pets?
Who will care for them if the patient is not able to?
As this dimension often lies outside of the areas most physicians feel confident in addressing, consider requesting assistance from other members of the health care team, including:
Additional resources for help and support may be available:
- Through a health care institution
- From a local hospice or palliative care program
Addressing Physical Suffering
Multiple studies indicate that patients with life-threatening illnesses have many physical issues that are unaddressed. If left unmanaged for long periods, each can add considerably to a patient’s sense of suffering
Today, suffering from physical symptoms due to lack of management is inhumane.
- Modern medicine has more knowledge and tools than ever before to manage:
- Each symptom needs to be pursued aggressively.
- Successful management often requires extensive and careful thought and individual clinical trials, until symptoms are brought under control
- If a physician is inexperienced, consultation with expert colleagues should
not be delayed
Function is critical to maintain independence. Physiatrists, nurses, and physical and occupational therapists may be helpful and knowledgeable about the exercises and aids that can be used to optimize and maintain function, and ensure safety
Sexuality and intimacy are integral aspects of each one of us, particularly through touch and the closeness to partners and family members we cherish. Illness and disfigurement may change the way people are able to interact. To establish individual desires and tensions, facilitate discussions between partners and key family members. Help them to look for alternatives that may be comforting
Addressing Spiritual Suffering
The spiritual dimension of human experience is universally challenged in the face of a life-threatening illness
- Each person has a sense of meaning and purpose to his or her life, and a sense of where he or she fits into the grand scheme of things
- This may have a frankly religious orientation or it may be expressed through faith or a personal sense of spirituality
- Nevertheless, the transcendental dimension is present in each one of us and it is critical that this dimension be explored when a patient requests PAS or euthanasia
Helping patients to establish or reestablish a sense of meaning and purpose is often fundamental to the relief of spiritual suffering. This may involve...
- Encouraging them to reminisce with family and friends
- Assisting with life closure, gift giving, and creation of legacies
Consider your own expertise comfort level in dealing with these issues
- Some physicians feel comfortable dealing with spiritual suffering
- Others feel inexperienced and out of their depth
- As these issues are critical and may be very time consuming, a skilled hospice chaplain who works with a psychiatrist or psychologist skilled in end-of-life care, may bring considerable skill and support to both the patient and the physician
Do not make assumptions about clergy
- While it would be ideal if the needed skills came from the patient’s own pastor, do not assume that all members of the clergy are equally comfortable with the care of patients with advanced life-threatening illness
- Like physicians, many have not received adequate training in chaplaincy issues and are ill equipped to deal with the profound conflicts surrounding requests for physician-assisted suicide or euthanasia
Fear of Loss of Control
Explore areas of control, independence
- The autonomy and control that each one of us has over our lives and affairs is central to our personhood
- While this need for control varies in some cultures, it is a central feature of Western society
- For many, independence is profoundly challenged by illness that is debilitating and deprives them of mastery or control over their day-to-day activities and their sense of future
Be aware that this fear of loss of control may be further heightened by:
- Fears that their expectations and needs won’t be addressed, or
- Fears that people will do things to them that they don’t want (e.g., forced feeding, invasive procedures, life-sustaining therapies, etc)
Remember that the specific issues that are most important for each person to control are unique to that individual. They may include a whole range of issues such as choices about:
- Day-to-day activities and experiences that are meaningful
The physician can be instrumental in helping the patient to continue to realize as much control as possible, given the changes in function that are likely to occur
This may take unusual flexibility on the part of the physician and the health care team
Specific actions you can take include:
- Educate and help the patient plan for aspects of medical care that are rightfully under his or her control:
- The ability to accept or refuse any medical intervention
- Choices about life-sustaining therapies
- Encourage the patient to:
- Select personal advocates and proxy decision-makers
- Prepare advance directives
- Plan for death, including:
- Disposing of personal belongings after death
- Teach family members and caregivers alternate approaches to caregiving that optimize patient participation in decision-making
Instead of "doing without asking," encourage family and caregivers to "ask before doing"
Addressing the Fear of Pain and Other Symptoms
While patients may find current symptoms acceptable, they frequently fear a future where symptoms will be out of control and unbearable, particularly when they are dying. As a physician, you can:
Reassure the patient that most all symptoms can be well controlled
As appropriate, discuss alternate approaches to symptom management, including anesthesia
Ensure that patients and families know that pain does not get suddenly worse as death approaches
- Help them to understand the difference between pain and terminal delirium, particularly if they have known someone else who had a difficult death
- As many patients fear adverse effects of medications, particularly drowsiness and confusion, discuss their management should they occur
The possibility of end-of-life sedation, should pain or other symptoms be unbearable for the patient and unmanageable by experts, may be explored with the patient and family during advance care planning discussions
- Some patients and families will find the possibility reassuring
- Others will not want to consider it
Most importantly, during all of these discussions, make a commitment to keep working to manage the symptoms until they are satisfactorily controlled. Patients fear being told, "I’m sorry, there’s nothing more I can do"
Addressing the Fear of Being a Burden
In several studies, one of the things patients fear most about a life-threatening illness is the prospect of being a burden to others. This is, in some ways, a corollary of the fear of losing control, particularly as our culture generally does not value being dependent on others
Try to establish why the patient does not want to be a burden
Address caregiving issues
- If there are caregiving issues, facilitate a discussion between the patient and family
- In many cases, families are willing and eager to care for the patient and their desires simply remain unspoken
- If patients and families are worried that family members will not have enough skill to provide adequate care, suggest home hospice care
- This is the fundamental goal of the home hospice team, to help educate, train, and supplement the family in the care of the patient
- Alternate care settings can be arranged as a backup if care at home does not go as planned
- Home hospice agencies must make provisions for brief periods of respite care if it is needed
- If there are financial issues, help the patient find information and resources that will be acceptable
- Remember that many people are unaware of the services available
Consult with social workers and nurses, who can:
- Help find solutions to issues
- Provide training and backup to unskilled family members
- Serve as a significant resource to the physician to help lessen the patient’s fear of being a burden
Addressing the Fear of Indignity
Explore what loss of dignity means to the particular patient. Potential elements of this complex concept may include:
Once the issues are clear, explore approaches to caring and resources that can help to maintain dignity
- The patient, where possible, participates in decision-making
- Family members and caregivers know how to approach and address these issues
- Everyone has permission for their roles and each task that they will do
Reassure the patient that he or she has dignity in your eyes
Addressing the Fear of Abandonment
For some patients, their worst possible fear is abandonment—by families, their friends, their physicians, or other health care professionals. This fear can be heightened by the realization that others cannot cope with the illness and the changes it brings, or the role of being a caregiver
Explore this fear in detail with the patient and family in a family conference
- Try to establish how realistic the patient’s concerns may be
- If tensions seem high or there are indications that family and friends are not coping, a meeting with everyone may be helpful to assess the situation
If caregiving is becoming onerous, offer a respite break or an alternate setting for care
As appropriate, try to connect families to available supports in the community, particularly those provided by the interdisciplinary teams available through hospice and palliative care programs
Above all, when addressing fear of abandonment, reassure the patient about your plans for being involved in ongoing care