Both the family and the patient have emotional needs. Many of these needs can be helped by talking about the needs and their feelings.

Many of the emotional aspects of palliative care or end-of-life are addressed through the National Cancer Institutes (NCI) Web site.

CeCe Whitewolf, JD Confederated Tribes of Umatilla and Nez Perce Dx 1998 Breast Cancer

"I encourage people who are terminal with cancer to tell your family about it. To tell your children, to tell your aunties, your sisters, your mom and dad whomever. Give your family an opportunity to come and help you if they can. Sometimes they have strange reaction to that kind of information, but tell them." to play Video Vignette - click

CeCe Whitewolf, JD Confederated Tribes of Umatilla and Nez Perce Dx 1998 Breast Cancer

"Also, don't let the Indian Health people or the medical people, not talk about your diagnosis with your family members. I've known people through the Indian Health who, the patient knew and CHR knew of the terminal cancer diagnoses. But the CHR was not able to tell the family member of the terminal diagnoses until almost the very end. There is a form that you can sign, information release form, with Indian health service and on that information release form you can tell, you can give permission to all the medical people to tell your entire family, anyone who asks, so people aren't left out. Sign that form so that CHR and those people can feel free to help you with your dying process." to play Video Vignette - click

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CeCe Whitewolf, JD Confederated Tribes of Umatilla and Nez Perce Dx 1998 Breast Cancer

"This particular family, the children today I just talked to them about two or weeks ago. The children still today are so mad at the Indian Health people, they're so mad at their mother, they're so mad at their brothers and sisters, because they didn't know about the cancer diagnoses until a week before she died, they were so angry. And they still carry that anger now, even two years later. They haven't put it away." to play Video Vignette - click

• The National Cancer Institute (NCI)
  • NCI is part of the National Institutes of Health. They are the leader for scientific research on cancer. Their web site has accurate information about cancer and end-of-life. This leaf is based on the NCI's web page. http://www.cancer.gov/cancertopics/factsheet/support/end-of-life-care.
  • The reading level on this web page was very high. Linda B (NACR) changed much of the phrasing from the page. This was to make the information more understandable for our community. NCI staffs who are uneasy with any changes should contact Linda B directly. Use the comment box to contact her.
  • The NCI has a lot of information on their web pages. It is written for all people. Thus, this section does not include cultural or tribal specific information. It is still very helpful and good information.
  • Someone who has cancer may or may not die from the disease. This section describes more about dying from cancer. Most cancer deaths are peaceful and gentle.
  • Western providers may decide that the cancer cannot be controlled. This means that the cancer treatments are not working. The providers may believe that the patient to going to die from the cancer. The tests and cancer treatments stop. But, the patient still receives medical care. This care focuses on making the patient comfortable. The patient's symptoms are relieved as much as possible. Those symptoms may include pain, constipation, nausea, and breathing problems.
  • Some patients remain at home during this time. Others enter a hospital or other facility. Either way, services are available to help the patient and the family. This help includes dying and the body, mind, emotions and spirit (Medicine Wheel).
    

    CeCe Whitewolf, JD Confederated Tribes of Umatilla and Nez Perce Dx 1998 Breast Cancer

    "And also with both my mom and stepfather I learned about the end of life or the Circle of life. It got to be where my mom and my stepfather both went back and they were children towards the end. Their circle had come full circle, they had come back to the time when they were children and towards the end I had to bath them, I had to wipe their behinds when they had soiled their diapers and their bedding. I had to feed them I had to give them water. Those things that you do when you care for your children, you do that when you care for people who are dying." to play Video Vignette - click

  • Hospice care provides such services.
  • Hospice is described in another leaf.
  • End-of-life is different for each person. Most patients want information about what is happening to them. They may also want to know what to expect. These concerns may be unique to the patient. The family also is likely to have questions. Both the patient and family may ask the providers and spiritual healers questions about the end-of-life.

• The NCI lists common questions and answers about end-of-life below. These questions are from dying patients and their families.
  • How long is the patient expected to live? Patients and their families want to know how long the providers think the patient will live. This is a hard question to answer. Different factors change the answer:
    • Where is the cancer located?
    • What other illnesses does the patient have?
    • How strong is the patient's hope and will to live?
      • Providers can make a guess because they know a lot about the patient's body. However, they are likely to not want to make a guess. Providers see many dying patients who surprise them. They do not want to give false hope. They also do not want to destroy the patient's hope.
  
  
• When caring for the patient at home, when should the caregiver call for professional help?
  • Most Native patients prefer to be at home for end-of-life. A family member is likely to be the caregiver in the home. The Native family member rarely has medical training. There are times when these caregivers need help. Such help can be from the hospice or cancer providers. The caregiver can call for help in any of the following situations:
    • The patient is in pain that is not relieved by the prescribed dose of pain medication;
    • The patient shows discomfort, such as grimacing or moaning;
    • The patient is having trouble breathing and seems upset;
    • The patient is unable to urinate or empty the bowels;
    • The patient has fallen;
    • The patient is very depressed or talking about committing suicide;
    • The caregiver has difficulty giving medication to the patient;
    • The caregiver is overwhelmed by caring for the patient;
    • The caregiver is too grieved or afraid to be with the patient;
    • The caregiver does not know how to handle a situation.
  
  
  • What are some ways caregivers can give emotional comfort to the patient?

    CeCe Whitewolf, JD Confederated Tribes of Umatilla and Nez Perce Dx 1998 Breast Cancer

    "And during those two years, she and I and a lot of our family were able to do a lot of things that she wanted to do and so with some respects being told that you have a certain amount of time left in your life is pretty much of a blessing, because then you can do all the things that you want to do before your time." to play Video Vignette - click

    • Everyone has different needs. But some emotions are common to most dying patients. These include:
      • Fear of abandonment
      • Fear of being a burden
      • Concerns about their family's well fare
      • Fear about loss of dignity and loss of control
    • Concerns about unfinished business or issues
      • These are some ways caregivers can provide comfort:
      • Keep the person company - talk, watch movies, read, or just be with the person.
      • Allow the person to talk about their fears and concerns about dying, such as leaving family and friends behind. Be prepared to listen.
      • Encourage the patient to tell stories from their life.
      • Allow any topic to be discussed, even those that are difficult or upsetting. Most patients want to be included in discussions about issues that concern them.
      • Promise the patient that you will honor advance directives, such as living wills.
      • Ask if there is anything, you can do.
      • Respect the patient's need for privacy.
      • Respect the patient to have private time loved ones.
  
  
  • What are the signs that death is approaching? What can the caregiver do to make the patient comfortable?
    • Certain signs and symptoms can help give a caregiver some hints that death is near. These symptoms are described below. They include ways to help manage them. Not every patient experiences each of these. A patient who has one or more of these symptoms does not necessarily mean the patient is close to death. The caregiver can ask the providers and Hospice for more information about what to expect.
      • The patient is sleepy, sleeps a lot, or does not respond or appear alert. These are caused by changes in the patient's metabolism).
        • The caregiver needs to let the patient sleep.
        • The caregiver and family members can plan visits and activities for times when the patient is alert.
        • Most patients are able to hear after they are no longer able to speak. The caregiver and family need to talk directly to the patient as if the person can hear. This is true even if there is no response. Patients should not be shaken if they do not respond.
      • The patient is confused about time, place, and/or identity of loved ones. They may also be restless. They may tug at the bed linens or clothing. They may see and talk with people who are not present. They may think they are in different locations. These symptoms are caused in part by changes in the patient's metabolism. Gently remind the patient of the time, date, and people who are with them. If they insist that someone is there, allow them to talk with the vision. If they become agitated, do not try to restrain them. Be calm and reassuring. Speaking calmly may help to re-orient the patient.
      • The patient may not want to see other people. The patient may withdraw. This is caused by decreased oxygen to the brain, decreased blood flow, and natural mental preparation for dying.
      • Caregivers and family need to speak to the patient directly. They can let the patient know they are loved that people are there to support them. The patient may be aware and able to hear, but unable to respond. Professionals advise that giving the patient permission to "let go" can be helpful.
      • The patient may not want to eat or drink. This is caused by the body's need to conserve energy. It is also the body's decreasing ability to use food and fluids properly. This is the body's natural way to prepare for death.
        • Don't try to force feed the patient.
        • Allow the patient to choose if and when to eat or drink.
        • Ice chips, water, or juice may be refreshing if the patient can swallow.
        • Keep the patient's mouth and lips moist with products such as glycerin swabs and lip balm.
      • The patient may wet or soil the bed. This loss of bladder or bowel control is caused by the relaxing of muscles in the pelvic area.
        • Keep the patient as clean, dry, and comfortable as possible.
        • Place disposable pads on the bed beneath the patient and remove them when they become soiled.
        • Have the hospice staff show you how to change a diaper without hurting either the patient or the caregiver.
      • The patient's urine may become a darker color rather than yellow. Or their urine may be very small amounts. This is caused by slowing of kidney function. It is also due to decreased fluid intake.
        • Caregivers can ask the hospice or providers to help them learn about catheters. This includes how to insert one, keep it clean and remove it if necessary. The catheter helps the patient avoid their urine from becoming blocked.
      • The patient's skin becomes cool to the touch, particularly the hands and feet. The skin may look bluish in color, especially on the underside of the body. This is caused by decreased blood circulating through the arms and legs.
        • Caregivers can put more blankets on the patient.
        • The patients hands can be placed under the blankets.
        • Although the skin may be cool, patients are usually not aware of feeling cold.
        • Caregivers should avoid warming the patient with electric blankets or heating pads. These can cause burns.
      • The patient may have a loud rattling or gurgling sounds while breathing. Their breathing may be irregular and shallow. They have a fewer number of breaths per minute. Their pattern of breathing may alternate between rapid and slow.
        • These are caused by congestion from
          • Decreased fluid consumption
          • A buildup of waste products in the body
          • Decreased blood circulating to the organs.
        • Breathing may be easier if the patient's body is turned to the side. Pillows can be placed beneath the head and behind the back.
        • The labored breathing can sound very distressing to the caregiver. But gurgling and rattling sounds do not cause discomfort to the patient. Oxygen from special tanks can be ordered from medical offices. This may help some patients.
        • If the patient is able to swallow, ice chips also may help. In addition, a cool mist humidifier may help make the patient's breathing more comfortable. A steam (hot air) humidifier is not helpful to most patients.
      • The patient may have difficulty seeing. This is caused by decreasing vision.
        • Turning the head toward a light source helps the patient see a little better.
        • Leaving soft, indirect lights on in the room is also helpful.
      • The patient's pain increases. Many cancer patients do not have any major pain other than shortly following treatment and during end-of-life. The pain at end-of-life may be caused by progression of the disease.
        • It is important to give the patient pain medications as directed by the provider. When the dose does not seem to relieve the pain, the caregiver should call the provider for help. This help may be different drugs, higher dosages of the same drugs to may use non-drug techniques. These may be massage, relaxation therapy, and vision quests.
      • The patient may have involuntary body movements, jerking arms and legs. They may also lose their reflexes in the legs and arms.
        • The caregiver should not try to restrain the patient. These movements are unlikely to harm the patient.
        • If the patient has a lot of sudden jerkiness of the arms or legs, the caregiver needs to be careful to avoid being hit accidentally by these movements.
      • Changes in heart rate. This is another natural change that death in nearing.
      • If the patient has a Living Will, follow their directions. If the patient asked to not be resuscitated through a Do-Not-Resuscitate (DNR) order or other mechanism, do not call 911.
      • What are the signs that the patient has died?
      • There is no breathing or pulse.
      • The eyes do not move or blink, and the pupils are dilated (enlarged). The eyelids may be slightly open.
      • The jaw is relaxed and the mouth is slightly open.
      • The body releases the bowel and bladder contents.
      • The patient does not respond to being touched or spoken to.
      • What needs to be done after the patient has died?
      • After the patient has passed away, there is no need to hurry with arrangements.
      • Family members, caregivers and spiritual healers may wish to sit with the patient, talk, or pray.
      • When the family is ready, the caregiver can do the following:
      • Place the body on its back with one pillow under the head.
      • If necessary, caregivers or family members may wish to put the patient's dentures or other artificial parts in place.
      • If the patient is in a hospice program, follow the guidelines provided by the program. A caregiver or family member can request a hospice nurse to verify the patient's death.
      • Contact the providers to let them know the patient appears dead. They can contact the appropriate people to follow the local laws.
      • Call the funeral home
      • When the patient's family is ready, call other family members, friends, and spiritual healers who were not present when the patient died.
      • Provide or obtain emotional support for family members and friends to cope with their loss. This may be from their local spiritual or religious leaders, hospice grief counselors or other sources.
  
  

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