When death nears
Regardless of the setting in which a patient’s death occurs, your main goal as death approaches is to normalize the process for the patient and the family, thus ensuring the best possible transition. Knowing what to expect will help patients and their loved ones make decisions about how to help, who should provide care, where care should be provided, and what steps the patient and family can take to help the patient die at peace.
Each patient is unique. Each family is unique. Each dying person and family experiences the journey to the end of life with a specific set of psychological, spiritual, cultural, and family issues. Caring for terminally ill patients requires flexibility, a patient-centered approach, and an ability to compassionately listen and facilitate, meeting the patient’s needs and also supporting the family. As Dame Cicely Saunders, the founder of the modern-day hospice movement, has said, “How people die remains in the memories of those who live on.”
The palliative care team, often mainly the nurses, must help the family and caregivers find a level of comfort with their roles and provide them with the knowledge and support they need to achieve the goals of care as set out by the dying person. Naturally, these goals will shift and change in the process, as will the roles of the family and the health care team.
Setting the stage
Sharing the signs and symptoms of approaching death in a gentle and timely manner will help the patient and family cope with the process. (See Signs and symptoms of approaching death.) Often, family members will notice changes but won’t understand the significance of what they’re seeing.
Teaching during this time can relieve a great deal of stress and help the family determine if sufficient resources are in place for them as the patient’s needs change. This is also a time for spiritual conversations with the family and the patient, if he’s able, to help them work toward meaningful closure.
Teaching during this time can relieve a great deal of stress and help the family determine if sufficient resources are in place for them as the patient’s needs change. This is also a time for spiritual conversations with the family and the patient, if he’s able, to help them work toward meaningful closure.
Signs and symptoms of approaching death
| Body system | Signs and symptoms |
|---|---|
| Respiratory |
|
| Gastrointestinal |
|
| Musculoskeletal |
|
| Skin |
|
| Genitourinary |
|
| Cardiac |
|
| Neuropsychological |
|
Often, a dying person seems to withdraw and become more narrowly focused and introspective. Some retire into a bedroom; others bring their bed out into the living room. Either place then becomes the center of the household.
While the patient’s still able, this may become the time for a life review, finding meaning in life, and making peace. This process can be profound. Family members and caregivers commonly need a reminder that simply sitting and listening may, at this time, be the most important and appreciated role that they have. Many books have been written about the final gifts that may be gathered at this time; recommending some to the family might be greatly helpful and appreciated.
Providing information
As you see the patient’s death coming nearer, it’s crucial to be proactive in telling family and caregivers what to expect. Now is the time to prepare families, in general, for the probable course of the patient’s death. Each disease has specific symptoms to explain. Some families want everything explained at once; some prefer small amounts of information over time. Similarly, some members of the family may be designated to receive and interpret information, whereas others prefer not to hear the news directly. It may be helpful to have written information or checklists available. The importance of building rapport with the patient’s support system and assessing the family dynamics can’t be overstated. By exploring these dynamics, the team can effectively help the family and caregivers find and feel comfortable in their roles.
Estimating time
It’s very common, almost universal, for patients and family members to ask how much time is left. Most research with bereaved families suggests that it’s helpful for them to know what to expect and when to expect it. The best course is to give the family a range based on how the patient is doing at the present time and your experience with other patients in similar circumstances. Express the range as weeks to months, days to weeks, hours to days.
This may also be a good time to explain that things can change very quickly and, if there’s anything that’s important for them to accomplish before their loved dies, it may be wise to do it sooner than later. Explore whether there’s someone else the patient may want to see or speak to or an event the patient may be waiting for. A family member may need to assume the role of facilitating these arrangements for the dying person.
A similar discussion might be centered on how each person might feel if the death happened when they weren’t present. Some family members wish to be present and some don’t. (See Missing the moment.) Talking about these issues ahead of time helps to prevent regrets later.
Expert InsightsMissing the moment
Recently, a dying patient’s two adult daughters took turns staying at their mother’s bedside for 3 days, around the clock. On the fourth day, they took a short break together — and that’s when their mother died. Now one daughter feels tremendous regret that “Mama died alone,” even though I assured them that two nurses were present and that their mother died peacefully. What more can I do? — A.F., Conn.
Try having a sensitive discussion with this patient’s daughters. When this situation came up for me recently, I started by finding a private setting for a quiet talk. I gathered the grieving children and the nurses who were at their mother’s bedside. I asked the nurses to recount again how peaceful and comfortable their mother was — “just like she’s been with you throughout your lovely vigil.”
The patient’s daughter asked if her mother regained consciousness and asked for her children. “No,” said one of the nurses, “she remained still and peaceful. Joanne and I sat quietly with her after we turned her and moistened her lips.”
Then I offered a few little anecdotes to illustrate how often we see this happen. “Once another daughter in a similar situation kept watch over her mother for several days. She went home for a quick shower and change of clothes. Shortly after she left the room, her dear mother died. Another patient waited until his wife stepped into the restroom and then died.”
If I were in your shoes, I’d take the hands of both daughters, who may be crying by now, and share the following observation: “I’ve come to believe that if the patient wants family to be present at the last breath they will be, and if she doesn’t, they won’t.”
This may lead them to ask, “But why wouldn’t Mama want us with her at the end?”
Having observed thousands of deaths, I’m convinced that we fully participate in how and where and when we leave the planet. Simply remind them that dying is a spiritual experience — and quite an intimate one. Encourage them not to take their mother’s choice personally: “She needed to do this in her own way and time.”
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