End-of-life is a confusing time for both patients and their families. We all understand that end-of-life means the final phase in life but, oftentimes we don’t know what this phase entails. The responsibilities of the primary caregiver will be altered significantly as a patient’s condition continues to worsen.
Hospice care professionals can help families to better understand the dying process and most importantly, can help to ensure that the dying patient is as comfortable as possible. This article will provide caregivers useful information such as a general overview of signs of approaching death, how to provide better care, when to call for help, and what to expect immediately following death.
Signs and Symptoms Of An Approaching Death
The dying process can differ by individual, but there are several signs and symptoms that many dying patients display as they approach death. Knowing certain signs and symptoms can help caregivers and families of a dying patients to better prepare themselves both emotionally and organizationally. It is always recommended for a patient’s primary caregiver to discuss the dying process with their hospice support team for more comprehensive information. However, below is a general overview of signs that a patient may be entering the final weeks of life:
- Increasing weakness and/or exhaustion.
- Increase in the need to sleep, having to spend the large majority of the day in bed/resting.
- Significant decrease in appetite or no appetite.
- Difficulty eating or swallowing fluids.
- A decrease in the patient’s ability to communicate and/or concentrate.
- A general lack of interest in things that used to interest them; a strong feeling of apathy.
- A desire to only have a small number of certain people close by and limiting time with visitors.
As the dying process continues, the patient will exhibit certain physical symptoms, especially during the final days of life. Again, it is recommended for families and caregivers to discuss the dying process with the patient’s attending physician or hospice team for a deeper understanding of what to look for. That being said, here is a general overview of the signs and symptoms that a patient may be entering the final days of life:
- Slowed breathing, oftentimes with longer pauses between each breath.
- Noisy/congested breathing. This type of breathing can be accompanied by a gurgling or rattling sound caused by a patient’s inability to clear any fluids from the throat. Although this symptom may startle the caregiver and family, it is important to remember that the dying patient is unaware that these sounds are occurring.
- Skin becomes cool and sometimes takes on a bluish tone, more noticeably in the hands and feet.
- General dryness of the mouth and lips.
- A decrease in the amount of urine that is expelled.
- A loss of control of the bladder and bowels.
- Involuntary movements that can be repetitive or give the illusion of restlessness.
- Strong feeling of confusion regarding the time, place, and identify of people.
- Hallucinations – the patient expressing that they can see and/or hear people or things that are not there. These hallucinations are common and oftentimes follow themes such as traveling/preparing to travel or; being greeted or welcomed by other individuals that have already passed.
- Becoming less responsive to touch or sound; more frequently alternating in and out of consciousness.
It is important to remember that the passing of each individual will be different. Which symptoms occur and the order of the symptoms may vary. The best thing for caretakers and families to do is to provide the best care that they are able while these signs and symptoms are occurring during the final weeks and days of life.
Providing Care and Comfort
Family members should remember that dying is a natural process that will occur on its own timeline. However, there are some steps that caregivers and families can take to make a dying patient’s surroundings more peaceful. Because patient needs will vary, your hospice care team will help advise you as to what specific actions should be taken to enhance the level of comfort of the patient. Below is an overview of potential steps caregivers and families can take to make a patient more comfortable:
- Utilize soft padding such as foam in order to make beds and chairs more comfortable for the patient.
- Based upon the recommendations of the medical team, assist the patient in changing positions.
- Frequently change bed sheets (as often as needed).
- To assist with breathing, elevate the patient’s head (if this is comfortable for the patient) or; help the patient lay on his/her side.
- Help keep the patient warm by using blankets, by gently rubbing their hands and feet, or by soaking hands and feet in warm water (if recommended by medical team).
- Avoid using electric heating devices such as electric blankets as they may cause irritation and/or burns to the patient’s skin.
- When communicating with the patient, use a clear and calm voice. Providing the patient with reminders on the date, time, place, and people who are present may ease their confusion. It should be noted that these reminders may not benefit all patients.
- If a patient becomes completely withdrawn, voice supportive reinforcements that do not require any response. Calming phrases such as, “everything is ok” or, other positive statements recommended by your hospice team will help to create a calm and peaceful ambience.
- If the patient can swallow, help to keep the lips and mouth moist by offering small sips of liquid using a straw or spoon. There are certain swabs and lip balms that can also be used to combat dryness in the mouth and lips.
- Be present. Helping to ease loneliness is a priceless comfort to a dying patient. Simply sitting and gently touching the patient can help to put them more at ease.
Helping to Alleviate Pain
It will be very difficult for a patient to remain peaceful and calm if they are experiencing severe pain. Effective pain management is essential for patients suffering from illness. Hospice care professionals are trained to provide assistance with pain management during end-of-life. Pain management is a critical focus of hospice professionals who will take all reasonable measures needed to provide a patient with relief from pain.
When To Call For Help
When caring for a dying patient at home, it is important to know when to call and ask for help. Open communication with the patient’s physician and hospice care team will allow the patient to receive the best care possible. We have included several different scenarios which would require intervention from the patient’s health care or hospice team. Please remember, this list is by no means exhaustive, which is why clear and open communication with medical professionals is vital:
- The patient has persisting pain which has become difficult to manage or relieve.
- The patient is no longer able to take medications as prescribed.
- The patient demonstrates certain signs of distress such as being in pain, difficulty breathing, and severe agitation.
- The patient has had an abrupt change in consciousness, has become much less responsive or, has had a seizure.
- The caregiver has become too overwhelmed by the patient’s conditions and needs and requires assistance.
What Happens Immediately Following Death?
When death does occur, the patient’s muscles will relax, their breathing will completely stop, their heart will stop beating, and they will have no pulse. It is impossible to predict how a caregiver or family will react to the death of a loved one. It is both common and normal for caregivers to feel as sense of shock following the death of their loved one.
Caregivers are required to notify their hospice support team and the patient’s attending physician of a patient’s death. Although medical professionals have to be notified, a natural death is not considered as an emergency. This means that caregivers and families may decide to spend some time to sit peacefully with their loved one or with one another before notifying anyone. This decision can only be made by the patient’s family.
Harbor Light Hospice Is Ready To Support You
End-of-life is a confusing and emotionally challenging time for patients and their families. Although end-of-life is natural, this doesn’t make the process less intimidating. Patients and their families should remember that support is available. Hospice care professionals can help guide patients and their families through this process and most importantly, ensure that a patient able to spend their remaining time peacefully and comfortably.
To learn more about how hospice can support your family, contact Harbor Light Hospice by phone or send us a message online today.