Advice on what to do when an aging loved one wants to hasten death
The request may not be very clear. Expressions might include, “I’m sick of being sick. Can’t this just be over?”; “Why won’t God just take me now?”; “We don’t let our animals suffer like this, so why do I have to?” or “Can’t you do something to help this along?”
Or the request might be much more subtle, such as your own mother asking her hospice nurse, “Is there a large body of water near here I could just walk into?”
The good news of the past century is that due to medical advances, we are living much longer and often staying active and healthy longer. But dying these days takes longer too, and it is often accompanied by multiple chronic illnesses that slowly chip away at physical and cognitive function. Even eventually terminal illnesses, such as cancer, AIDS or kidney and liver failure, can be managed for many years, even as quality of life declines.
Dementia, such as Alzheimer’s, will afflict 8 in 10 of us if we live long enough. And it typically take 6 to 8 years from diagnosis to death, sometimes even longer. It is no wonder that someone who is aging and ailing might express a desire to just “hurry up and die.”
Even a request as clearly stated as, “Please, I just want to die,” should not be taken at face value but should not be dismissed or ignored. Even subtle hints must be heeded. Rarely do people really want to die. They want to stop the suffering. Suffering may be physical (pain, persistent nausea, extreme fatigue or insomnia, breathlessness or skin breakdown), emotional/psychological (grief at approaching loss, anxiety, depression or awareness of the burdens placed on family) or even spiritual/existential (loss of meaning and purpose, hopelessness, loss of identity, estrangement from God or spiritual/religious community).
Often, if the sources of suffering from illness and aging are skillfully addressed, individuals can face the end of their lives with peace. The trick is to recognize the “cry for help” and respond appropriately.
Do
- pay attention
- express empathy
- gently probe
- get professional help
- assess the risk of attempted suicide and take appropriate precautions
Don't
- ignore, brush off or minimize requests
- respond with negativity, judgement or criticism
- assume it is not serious
- assume it is serious
- allow your own frustration and suffering to reinforce requests to hasten death
Do pay attention
If you are caring for someone who is aging or ailing (at any age) from a chronic, progressive or debilitating illness, keep alert to hints of suffering. We are good at heeding physical complaints and know how to respond by seeking skilled medical care. But expressions of emotional and spiritual pain can be both harder to hear and harder to heed.
Some examples include hopelessness or worthlessness (“There’s nothing left for me,” “I’m such a burden to you,” “I can’t do anything anymore”), withdrawal from company or activities that used to bring pleasure, listlessness, frustration and anger. Any sharp personality change should be a red flag, as it could arise from medications, disease process or despair.
Do express empathy
The burdens of caregiving are enormous, and it can be difficult to set aside your own sense of hopelessness or frustration to listen empathically to the person you are caring for. Additionally, you probably can’t really know what they are experiencing, even if you know them well. Empathy can be defined as “sympathy without condescension,” which will work just as well. What does this mean? It’s not “I know just how you feel” but rather, “I know this must be very difficult for you.” Acknowledge the suffering and let them know you have heard.
Do gently probe
If the person complains in a way that signals emotional or spiritual suffering, gently ask some follow-up, open-ended questions: “What’s making you feel that way?”or “Can you tell me more about that?” Research tells us that people with advancing illness have a need to make sense of their experience. And the most natural way to make sense is to verbally explore and describe what they are going through, to turn a chaotic bundle of powerful feelings into a coherent story. Just by asking to hear more and listening, you can ease the suffering of isolation and non-sense.
Do get professional help
The person’s physician should be skilled at dealing with the immediate effects of illness and aging. However, doctors focused on cure or disease management may not be as skilled at addressing symptoms or side effects. They are rarely skilled at dealing with emotional and psychological suffering, let alone anything existential or spiritual.
If you sense the person’s needs are not being met, request a palliative care consultation. Palliative care focuses on alleviating all forms of suffering, and maximizing comfort and quality of life for the patient and for family and caregivers. It can be provided at any age and any stage of illness. It typically involves an interdisciplinary team–physician, nurse, social worker and sometimes a chaplain–to ensure “whole person” care.
If palliative care is not available from your healthcare provider, consider “integrated therapies” or “complementary” care services, or reach out to a licensed clinical social worker or care manager who specialize in dealing with people suffering from advancing illness. Many provide services at reduced rates or, if attached to an integrated healthcare system, at no additional charge. Often when the sources of suffering are addressed and eased, the desire to hasten death subsides.
Do assess the risk of attempted suicide and take appropriate precautions
Suicide moved into 10th place in American causes of death in 2010, along with heart, lung, cerebrovascular and kidney diseases; cancer; diabetes; Alzheimer’s and the flu. The highest suicide rate is in the 45- to 64-year-old age bracket. The second highest is in the 85 and older bracket. The rate for 85 and older rose sharply between 2009 and 2010, and is rising still. While fewer very elderly people (more men, by a vast majority) attempt suicide, a higher percentage complete the job.
It is unknown how aging and illness play into thoughts of suicide, but both can create known risk factors, such as prolonged stress, social isolation, loss of meaning and purpose, hopelessness and depression on top of the distress of physical ailment. A person is considered acutely, imminently at risk for suicide if he/she is experiencing any of these factors, talks about suicide, and has access to a means and a plan. “Means” might include firearms, potentially lethal medications or poisons, methods for suffocation, asphyxiation, hanging or even a working car.
If you suspect your loved one is at risk for suicide, don’t be afraid to ask very directly, “Are you thinking about killing yourself?” and “Do you have a plan in mind?” If the answer is yes, don’t try to talk him/her out of it, but do stay with the person and remove (if possible and without endangering yourself) the means from reach. Encourage him/her to contact a doctor or counselor, or let you take him/her to an emergency room. If neither is successful, call 911 or the National Suicide Prevention Lifeline at 1-800-273-TALK (8255) for assistance.
A word about physician-assisted suicide: The issues surrounding physician-assisted suicide or physician-aided dying (PAD) are too complex to explore here, but there are those who consider suicide a rational and appropriate choice in the context of incurable, terminal illness. This may be so, and it may be possible to pursue in one of the five states in which the practice is currently legal–Oregon, Washington, Vermont, Montana and New Mexico. However, qualifying criteria in the states where PAD is legal and regulated (OR, WA, VT) rerquire that the person be assessed for psychological health and cognitive competence, and that other sources of suffering are considered and addressed or ruled out. For more information, contact Compassion and Choices, www.compassionandchoices.org, 1-800-247-7421.
Do not ignore, brush off or minimize requests
Our natural instinct on hearing any expression of pain or discomfort is to immediately deflect or offer comfort and cheer: “It will be all right,” “You don’t really mean that” or “You will feel better tomorrow.” Responses like these have two very detrimental effects–they signal to the person that her suffering is not real or worthy of attention, and they discourage further efforts to express or make sense of suffering. However, they don’t stop the suffering–and can significantly increase it.
Do not respond with negativity, judgement or criticism
Responses such as, “What a terrible thing to say!”; “After all I’ve done for you, you want to just pack it in?”; “I thought you were a fighter!”; “Wanting to die is a sin!”; “Don’t you love us enough to want to stay alive?” or even “Don’t be so negative!” will, without fail, significantly increase the person’s pain and shutdown any sharing. Even if you hold strong moral or religious beliefs about the duty to resist disease and death, setting them aside, responding with empathy, and making an effort to find and ease your loved one’s suffering will have a far more positive effect.
Do not assume it is not serious
Requests to hasten death can be expressed lightly and hesitantly but meant very deeply. They signal real suffering of some kind. And in severe cases can, as noted above, signal an intention toward suicide.
Do not assume it is serious
There comes a time in every journey toward death when the person who is ailing or the most burdened caregivers–or both–feel it is just taking too long. There is an awful limbo involved in the experience of dying–the person is unable to fully engage with life but is also not able to leave it. Requests to hasten death may be just an expression of the frustration of this phase, which is certainly real and serious, but not necessarily a cause for an emergency response.
Responding with empathy, allowing space to express and addressing suffering where possible will ease the experience, if not eliminate the limbo. If the person is able, activities such as reminiscence, recording life histories and stories, asking for wisdom and engaging in projects in her presence can help relieve the sense of isolation and purposelessness.
Do not allow your own frustration and suffering to reinforce requests to hasten death
About the only job harder in this life than ailing, aging or dying is the job of caring for someone who is ailing, aging or dying. Caregivers do hard work and carry huge emotional and existential suffering of their own. The closer the relationship between the caregiver and the care receiver, the greater the burden.
Physical and emotional exhaustion can leave your feelings raw and your inhibitions weakened. You might never say, “I wish you’d just go ahead and die!” While you might not even explicitly think this, you might feel it and you might be unconsciously expressing it. And this is not wrong, mean or uncaring, nor does it mean you are an awful person. It is completely normal. However, while your feelings may be normal and even justified, you do have an obligation to handle them responsibly — which means expressing them safely at a time, place and manner that will not harm the person you are caring for.
Where is this magical place? The shower or a support group, a friend’s shoulder or counselor’s couch, church or temple, garden or squash court. Support for caregivers is everywhere, from websites to books to groups. You cannot care for anyone else if you do not first care for yourself. Remember what they say on airplanes: “Put your own oxygen mask on first before assisting others.”
Summary
There was once a hospice patient who was the stereotypical Italian mama, who cooked all day, everyday, and for whom every problem could be solved by lasagna or tiramisu. As her breast cancer advanced and she became bedridden and lost her appetite, she said over and over again how her life wasn’t worth living if she couldn’t cook, and especially if she couldn’t eat. “Just kill me!” she shouted to anyone who would listen. Her granddaughter, in total frustration one day, said, “Nonna, you can’t cook, but you could teach me!” So they spent the next six weeks, for a couple of hours every day, as long as Nonna’s strength held out, writing down her recipes and recording her on video, demonstrating her techniques. She never again said anything about wanting to die.
Requests to hasten death must be heeded and explored, but the vast majority of the time they are actually expressions of suffering, not a real desire to die. Because suffering comes in many forms, it must be explored from a “whole person” perspective, beginning with patience, empathic listening and gentle probing. Obtaining help from skilled professionals and knowing when there is real danger of harm will enable you to greatly ease the pain of those you care for through the most challenging phase of their life — and yours.
