Clinical Professor, Division of Palliative Care, Department of Family Medicine, University of British Columbia
Assessing and Managing a Request for Hastened Death

“Can’t we get this over with?”

Caring for patients who request hastened death

Many individuals with life-threatening illness will speak to their health care providers about death and even request hastened death. This article uses two case examples, medical literature and practical tips to suggest approaches for the assessment and management of patients who ask to end their lives.
 

Margery

Margery is an 83-year-old woman who was diagnosed with amyotrophic lateral sclerosis (ALS) two years ago. She had presented with some slurred speech, which rapidly progressed to weakness of her other cranial nerves and her lower limbs. She now has marked trunk and lower limb weakness and is unable to walk. She can no longer speak clearly but is able to write effectively and communicate her needs. Her pharyngeal reflexes became weaker and eventually a percutaneous endoscopic gastrostomy (PEG) tube was inserted to provide her with food and reduce the risk of aspiration. Despite the tube, she struggles with swallowing saliva and is very afraid of choking, so she keeps portable suction close at hand.

Margery had been an independent woman living on her own for many years since she and her husband divorced. She had raised her two daughters alone while working, and in her retirement had continued to be an active woman capable of caring for herself and making her needs known.

Her family physician has been making home visits for some time and enjoys conversing with Margery. Margery’s daughter Linda has been staying with her for several weeks and is present during the family physicians’ visits.

During previous physician visits, Margery has communicated to him by written notes that she is tired and spends most of her day in bed. She is not hungry and often wishes that her feeds would be turned down so she didn’t feel full. She still has suction at hand despite her saliva volume being reduced by glycopyrrolate, which was started when her PEG tube was inserted. On the day before her family physician’s visit, Margery had a mild choking episode but was otherwise using the suction occasionally. While her physician was present, she wrote a message and handed it to him:

“Can’t we get this over with? I am grateful for your care but I am too tired to go on with this any longer.”

When a patient asks for hastened death: Initial considerations

Requests for hastened death or physician-assisted suicide are troubling and emotionally challenging for physicians. It is often tempting to give the standard quick answer, “I can’t do that for you because it is illegal,” and move on to a safer topic. A patient’s family and friends typically feel upset and fearful and avoid discussing the subject. However, entering into such a discussion with a patient can give a physician a better understanding of the patient’s situation and often help prevent suffering.

It is not uncommon for patients who have advanced illness to request a hastened death or express their readiness to die. The expression of these desires often fluctuates over time. Relatively infrequent, however, is a patient’s persistent desire for assisted death. Although 10% of patients may consider hastened death, a lower percentage will actually pursue it with their physician.1 For example, in the state of Oregon, where physician-assisted suicide has been legalized and is readily available, only .002% of the total deaths in 2012 occurred by accessing this program.2

What the literature shows

A systematic review of the literature on a patient’s desire for hastened death3 found that the factors associated with this request can be categorized as follows:

1.    The expression of feelings about and current reactions to his or her circumstances (such as fears about death and loss of control).
2.    The communication of distress and suffering and/or as a way of exploring options for relieving the distress.
3.    The seeking of information about suicide or euthanasia as a response to 1 and 2.
4.    A specific request for health professional assistance with hastened death or an acknowledgement of an intent to suicide.

A number of studies have looked at the relationship between depression and the desire for hastened death. These studies have found that patients who request hastened death have a much higher rate of depression as compared with terminally ill patients who do not request hastened death.4 In general, issues of psychosocial distress such as being a burden, lacking social support, experiencing spiritual distress and having a poor quality of life seem to be the major factors, and one study suggests that a request for hastened death may be determined more by an individual’s psychosocial traits and beliefs than by disease severity or symptomatic distress.5 

Addressing a request for hastened death in practice 

When dealing with a request for hastened death, you need to:

  • be sure about what the patient is asking;
  • acknowledge the patient’s suffering;
  • listen actively to what the patient is communicating both verbally and non-verbally;
  • assess the patient for physical, psychosocial and spiritual suffering; and
  • make a care plan with the patient.

Any approach to assessing the patient will require time. If you do not have that time when the patient makes the request, you need to:

  • acknowledge the patient’s suffering; 
  • validate the importance of discussing the request at length; and 
  • plan a time to have this discussion as soon as possible or refer the patient to other supports if available (e.g., spiritual care or psychosocial support).

Many times patients will use euphemisms to talk about or request hastened death, so it is essential to clarify what they are actually saying or requesting. In Margery’s situation, it is not unrealistic to conclude that she was simply asking for the visit to end, rather than her life. In other situations, such comments may simply be an invitation to the health care professional to acknowledge a patient’s suffering or as a way for the patient to retain a sense of control.

If you tell the patient that physician-assisted suicide is not legal, or say that it is not possible, you risk making the patient feel abandoned and may add to his or her suffering. The conversation will likely go no further and the chance for a therapeutic encounter is lost.
 

Responding to suffering: A particular challenge 

You can acknowledge the suffering of the individual in a way that invites further explanation. For example, you could say: “Usually when people ask me this, they are suffering a lot. Tell me more about what is making you feel this way.” Inviting patients to elaborate on their situation is often enough to help them reveal their concerns.

Patient’s suffering may be caused by multiple issues. Some patients may not mention symptoms because they assume the symptoms cannot be controlled and thus are not worth reporting. It is useful to have an assessment checklist or tool that guides your assessment of symptoms that contribute to physical discomfort, and addresses anxiety, depression, and existential suffering. You may find the Edmonton Symptom Assessment Scale is a useful tool.

Ask the patient about common physical symptoms of pain, dyspnea, nausea, fatigue, constipation, insomnia, itching, and other symptoms specific to his or her condition. Constant pain, dyspnea, or other uncontrolled symptoms can certainly result in a request for hastened death if the patient believes that this is the only way to escape the suffering.

In all discussions include questions about anxiety and depression, as both symptoms are common in advanced illness. In a study of 189 patients with advanced disease, the will to live was significantly correlated with anxiety and depression, rather than physical symptoms.6 Patients are naturally anxious about the process of dying, particularly if they have illnesses that they feel will result in choking, suffocating or intractable pain. Often what they have imagined is worse than reality. Asking about their previous experience with a death can be very helpful in determining their fears about their own future.

Identifying depression in terminal illness can be difficult as the physical symptoms and signs of depression (poor appetite, weight loss, poor sleep) will often overlap with the symptoms of advanced illness. However, the psychological symptoms such as anhedonia (inability to experience pleasure), hopelessness and low mood will still be present. Often patients will assume that depression is a normal part of a terminal illness rather than a complication that can be treated. In a study of 197 advanced cancer patients, the diagnostically most useful question was: “Are you depressed?”7

Existential suffering is often the most difficult, yet the most common cause of the pervasive desire for hastened death. Being a burden to others, loss of control over the circumstances of death, perceived loss of dignity, and lack of meaning to life are the major concerns. Exploring these concerns will often take further discussions with family members and ongoing listening to and support of the patient.

An excellent article on existential issues at the end of life and a method for preserving and promoting dignity is available here.8

Resolving Margery’s request for hastened death

After acknowledging Margery’s suffering, her family physician began to listen to the issues that Margery was raising. She was somewhat short of breath, despite already being on an opioid, and this symptom always made her fearful of choking or suffocating.

She was otherwise comfortable and did not have any symptoms of anxiety or depression. She did not feel she was a burden to her daughters and thought that they were coping well with her illness.

Margery’s main issue was that she no longer saw meaning in her life. Her daughter felt that her mother’s life still had enormous meaning for her and her sister, and that there was still much Margery could reminisce about and share with them. Margery felt that her daughters’ wishes gave meaning to her life and she no longer requested hastened death. She died peacefully several weeks later, the night after a family party in which everyone shared old pictures and videos of their life together.

When the request for hastened death is complex

Not all situations resolve so beautifully in day-to-day practice. The request for hastened death is often more complex and not as easily resolved as in Margery’s case.

Brian

Brian is a 57-year-old professor who had been diagnosed with a late-stage tumour in the parotid gland. The diagnosis was a long time coming, as his complaints of ear and jaw pain at first did not lead to any imaging results that showed the tumor. At the time of diagnosis, he was told he had a high-risk tumour that was quite advanced. Brian had surgery and radiation therapy but the pain did not go away; instead, it changed in character to a neuropathic-type pain. Radiotherapy and surgery left him with a very dry mouth and the pain was ongoing despite trials of multiple medications. Even when he was started on very low doses, Brian experienced multiple side effects from opioids and antidepressants, often discontinuing them after only a short trial. None of the pain medications gave him any relief.

Brian frequently talks to his physicians and nurses about wanting to die and has joined a European organization that provides physician-assisted suicide. His oncologist referred him to a psychiatrist who felt that he would benefit from a trial of SNRI antidepressants (venlafaxine, duloxetine), which would also act as a neuropathic pain adjuvant. Brian refused to take them because his mother who had depression and substance abuse ended up “hooked on pills” and functioned poorly. His family convinced him to try and he reluctantly took the pills for a few days before stopping because of side effects.

One year after the surgery, bony metastases in Brian’s lower spine were found on a CT scan. Brian had radiotherapy for the metastases, which reduced his back pain, but he remained distressed because of pain at the original site of the tumour and in his lower back. Because of ongoing distress and pain, Brian was admitted to hospital for consideration of intrathecal pain medication.

On admission, physical examination revealed evidence of recurrent disease at the original tumor site. He had facial asymmetry and a lower facial droop on the side of the tumor. There was evidence of painful bony metastases in the lower spine which were confirmed on imaging. A CT scan of the head showed no evidence of metastases to the brain and his liver function tests were normal.

Based on the Edmonton Symptom Assessment Scale, Brian rated his pain at 5/10, his anxiety and depression scores at 8/10, and he reported 10/10 (worst possible) for sense of well being. When asked about his mood, Brian said it was poor because his pain was not controlled. He was asked about suicidal thoughts and he again mentioned his plan to go overseas to receive physician-assisted suicide. Brian stated that he needed pain control at this time, which he expected would be addressed during this admission. When asked about spiritual issues, he again focused on his need for physical pain relief and said he did not want any “religious people coming” to talk him out of his plan for physician-assisted suicide.

Brian has two grown daughters, one of whom he has regular contact with. He is divorced from his wife who has remarried. They no longer see each other. The daughter he speaks to regularly by phone lives in a different city. The other daughter has severe problems with substance abuse and has not been in touch with him in years.

Brian was a kinesiology professor at the local university but had to stop working several months ago because of his cancer. The only time he showed any animation in his interview was when he spoke about his teaching and research, which he had to stop due to pain.

Assessing complex cases

Brian’s assessment reveals many red flags for total pain. Total pain (or total suffering) is defined as “suffering that encompasses all of the person’s physical, psychological, social, spiritual and practical struggles”9 and requires careful attention from health care providers10. The four red flags that stand out in Brian’s situation are listed below with assessment guidelines:

1.    Standard therapies do not control the pain. There can be many reasons why Brian may not have had success with the usual therapies for pain. Consider all possible pain mechanisms and conduct multiple trials of both medication and non-medication therapies. Ensure that an appropriate trial is given to each medication prior to stopping it.

2.    The patient’s distress from the pain seems out of proportion to the physical damage caused by the disease or the distress remains high after the physical pain has subsided. Usually pain intensity is assessed using a numeric scale. These scales are limited as they may not accurately reflect all the complex physical, psychosocial, and spiritual input into the “total pain” that is causing the distress. There is a link between negative mood states and the number and intensity of symptoms for both cancer and non-cancer pain,  but you can only arrive at this conclusion after many assessments. Be prudent when making judgements about how people should respond to their pain.

3.    The patient has an inadequate psycho-social support network. Inadequate social support or a family that lacks the ability to support each other will have a negative impact on the patient’s symptoms.

4.    The patient is reluctant or even hostile when asked about psychological or spiritual needs. A private person may not readily discuss intimate issues with any health care professional. Recognize these patients and earn their trust first.

Risk of suicide

When admitting patients to hospital, it is important to assess their mood, determine whether they have suicidal thoughts or a plan, and ensure a suicide-prevention plan is in place. Suicide on a medical ward is a rare event and much less frequent than on psychiatric wards, but it still does happen. A review of published literature on suicides in a medical setting revealed:11

  • The mean age was 54.3 years.
  • The most common diagnosis was cancer.
  • Previous mental illness or self-harm was not necessarily apparent or recorded.

These risk factors are quite different from the risk factors for in-patient suicide in the psychiatric population where patients are younger, have been diagnosed with depression or schizophrenia and lack social support.

Screening questions for the prevention of suicide in patients admitted with advanced disease can be worthwhile. Ask patients whether they:

  • have had suicidal thoughts in the last weeks before admission; 
  • are currently thinking about suicide;
  • have a previous history of a suicide attempt; and/or 
  • are planning a suicide attempt.

A study that trialled a two-minute nursing-lead screening instrument was received positively by both patients and nurses.12

Resolving Brian’s request for hastened death

The resolution of Brian’s request for hastened death is much more complicated than Margery’s. The next section provides an approach with examples relating to Brian’s particular case.

A practical approach to the care of patients who request hastened death

As cases discussed above show, the care of patients who request hastened death is as individual as the factors that contribute to their suffering, and is best managed by a team of health care professionals. However, ready-made teams do not always exist, especially in rural and remote areas, but they can be formed to address a special situation or to provide care for a complex patient. The following are practical suggestions to help you provide care:

1.    Appropriately investigate and aggressively treat symptoms. Refer to palliative care specialists, anesthetists, interventional radiologists, psychiatrists, psychosocial and spiritual care providers in order to pursue the best possible medical, psychological and spiritual treatment of the patient’s pain and other symptoms.

2.    Determine the team member who best connects or communicates with the patient and allow that person time to develop insight into who the patient is in each domain of his or her personhood (e.g., past, future, roles with others, family and self, cultural background, transcendent beliefs and attitudes). This team member can facilitate connection with other team members, and either lead or assist in the counselling of the patient, depending on his or her skills in this area.

3.    Understand the nature of the patient’s suffering in all its dimensions. “Suffering occurs when there is a perceived threat to the integrity or continued existence of the person. It is individual in its origins and expressions. It is intensely private.”13 For example, Brian has suffered many losses―physical fitness, his teaching and research, family connections and his future. Consider all aspects of a patient’s personal history including previous experience with illness and death, other significant losses and hopes and dreams fulfilled and unfulfilled, to ensure you are not overlooking a source of his or her suffering.

4.    Foster healing. Healing is “a relational process that aims to enhance integrity and wholeness in the midst of suffering, irrespective of patient’s physical wellbeing and prognosis.”14 Facilitate healing by helping the patient recognize and accept his or her needs, such as depending on others for personal needs, reconciling with self and others, transcending self-preoccupation in order to relate to others, and opening up to the possibility of growth in emotional and spiritual dimensions.

5.    Understand what maintains a patient’s dignity and quality of life. Dependency on others can be particularly difficult for some people and can seem like a loss of dignity. By asking, “Is there anything that you feel is currently undermining your sense of dignity?” you bring the issue out into the open. Identifying how a patient’s dignity may be suffering can help the team adjust the way care is provided to preserve self-esteem. Further reading on learning how to promote dignity in care is available here.

6.    Give patients a sense of control. Patients often feel powerless and will refuse what seems to be in their best interest purely to be in control of something. Ask them directly: “How in control do you feel?” or “Are you living life or is life living you?” This exchange may reveal ways the team can alter how it provides care or makes decisions. Look for ways to give people a greater sense of control so they have multiple choices to make each day.

7.    Support the patient’s ability to find meaning in what is happening to him or her. We find meaning in what we have accomplished or created and in what we believe is important. We also find meaning in loving and being loved. Encourage patients to find meaning in their current life situation, as Margery did, by reviewing their lives and developing a life legacy for loved ones. Ask patients: “What aspects of your life and your accomplishments are you most proud of?” “What things did you do before you were sick that were most important to you?” “What are your hopes and dreams for your loved ones?” “What final words would you want to say to your loved ones?”

Focusing on the positive aspects of the present moment may help reframe a patient’s situation from one of successive losses to one that is more meaningful and encompasses both growth and loss. Other questions you might ask include: “What part of you is strongest right now?” “Are there things you enjoy doing on a regular basis?” “Are there things that take your mind away from illness and offer you comfort?” Facilitating activities, visits and talks with family, friends and volunteers can improve a patient’s quality of life and give it meaning.

8.    Set realistic goals with the aim of improving a patient’s quality of life. For example, Brian is no longer able to work but might he be able play other roles, such as mentoring others or healing relationships within his family. With adequate pain relief and mobility aids, is there any physical activity he could maintain and enjoy?

Develop a care plan that encompasses realistic goals and communicate the plan clearly to the patient, even if it states that a return to good health is not possible. If the patient understands the plan, he or she will be less uncertain and better able to cope.

9.    Often, family members are unsure how to help and care for their loved one, especially when roles are dramatically reversed. While death and dying may be familiar territory for health care professionals, it is often a foreign and frightening experience for the people most intimately involved. Asking about relationships and specifically encouraging Brian to reconnect with his family to ask forgiveness or say some final words are important ways to maintain dignity, foster hope and promote healing.

Conclusion

By using a practical approach to care when a patient requests hastened death, you can facilitate healing, maintain the patient’s dignity and, in some cases, improve his or her quality of life. You may also foster a sense of hope—not for cure or a longer life—but for meaningful experiences in each remaining day.



References

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2Oregon Health Authority. Death with Dignity Act.

3Hudson PL, Kristjanson LJ, Ashby M, Kelly B, et al. Desire for hastened death in patients with advanced disease and the evidence base of clinical guidelines: a systematic review. Palliat Med. 2006;20:693-701.

4Beitbart W, Rossenfeld B, Pessin H, et al. Depression, hopelessness, and desire for hastened death in terminally ill patients with cancer. JAMA. 2000;284(22):2907-2911.

5Suarez-Almazor ME, Newman C, Hanson J, Bruera E. Attitudes of terminally ill cancer patients about euthanasia and assisted suicide: predominance of psychosocial determinants and beliefs over symptom distress and subsequent survival. J Clin Oncol. 2002;20:2134-41.

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7Chochinov HM, Wilson K, Enns M, Lander S. Am J Psychiatry. 1997;154:674-76.

8Chochinov HM. Dignity and the essence of medicine: the A, B, C, and D of dignity conserving care. BMJ. 2007;335:184-7.

9Richmond C. Dame Cicely Saunders. BMJ. 2005;33:238.

10Berry M, Marilu P. Somatization and pain expression. In: Bruera E, Higginson I, Ripamonti C, von Gunten C, eds. Textbook of Palliative Medicine. London, England: Hodder Arnold; 2006:512-516.

11Ballard E, Pao, M, Henderson D, Lee L, Bostwick J, Rosenstein D. Suicide in the medical setting. Jt Comm J Qual Patient Saf. 2008;34(8):474-481.

12Horowitz L, Snyder D, Ludi E, et al. Ask suicide-screening questions to everyone in medical settings: the asQ’em quality improvement project. Psychosomatics. 2013;54:239-247.

13Cassell E. The nature of suffering and the goals of medicine. N Engl J Med. 1981;306(11):639-645.

14Kearney M, Mount B. Healing and palliative