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Palliative and Hospice Care

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Researchers evaluated caregivers’ psychological well-being while their loved ones were in the terminal period of cancer (i.e., life expectancy of six months or less).1Grunfeld E, Coyle D, Whelan T, et al. Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ. 2004 Jun 8;170(12):1795-801. The researchers found that 27 percent of caregivers experienced depression, and 40 percent of caregivers experienced anxiety while their loved one was in the terminal period of cancer.1Grunfeld E, Coyle D, Whelan T, et al. Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ. 2004 Jun 8;170(12):1795-801.

During the terminal period, the patient is also often experiencing depression and anxiety. The psychological wellbeing of people with cancer during the terminal period has also been evaluated; one study demonstrated 27 percent of cancer patients had depression and 27 percent had anxiety.1Grunfeld E, Coyle D, Whelan T, et al. Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ. 2004 Jun 8;170(12):1795-801.

Counseling can reduce anxiety and depression.2, Northouse LL, Mood DW, Schafenacker A, et al. Randomized clinical trial of a brief and extensive dyadic intervention for advanced cancer patients and their family caregivers. Psychooncology. 2013 Mar;22(3):555-63.3Badger T, Segrin C, Dorros SM, Meek P, Lopez AM. Depression and anxiety in women with breast cancer and their partners. Nurs Res. 2007 Jan-Feb;56(1):44-53. Many hospices provide counseling services for caregivers and their loved ones, which should facilitate treatment.In addition, if spiritual support is important for your loved one, then consider selecting a hospice that provides spiritual support as a service, which may also help with your loved one’s psychological well-being.

Palliative care

Palliative care treats symptoms, but extending life is not the goal of palliative care. Examples of palliative care range from pain management to chemotherapy used for palliative purposes, which does not cure the disease but improves the patient’s quality of life.5Earle CC, Park ER, Lai B, Weeks JC, Ayanian JZ, Block S. Identifying potential indicators of the quality of end-of-life cancer care from administrative data. J Clin Oncol. 2003 Mar 15;21(6):1133-8.

Hospice care

Hospices provide care for patients when they typically have six months or less left to live and provide comfort to a patient at the end of his or her life, but hospice is not intended to provide therapy that cures or extends the patient’s life. Depending on the hospice, health care professionals may provide care in the patient’s home, special hospital units or other settings.The type of support services provided by hospices typically involves the following: pain management, which can sometimes be administered at even higher than normal doses; psychological or spiritual counseling services for patients or their caregivers; or help performing daily care needs, such as getting dressed.4Torpy JM, Burke A, Golub RM. Hospice care. JAMA. 2012 Jul 11;308(2):200.

Hospices vary in their practices as to types of palliative care or life support therapy provided.6Current Clinical Issues: The Debate in Hospice Care. JOP. 2008;4(3):153-157. For example, researchers evaluated 100 hospices and found that 38 percent would deny patients if they wanted to receive nutrition through a feeding tube or intravenous therapy.Therefore, if your loved one would like to receive nutrition through a feeding tube while in a hospice, carefully review the hospice policies and select a hospice that is consistent with the type of medical care your loved one desires.

Another option to consider is an open-access model. These hospices provide their services, in addition to allowing a patient access to certain types of palliative care.7Levy MH, AdolphMD, BackA, et al. Palliative care. J Natl Compr Canc Netw. 2012;10:1284-1309.

You may encourage your loved one to reflect on the following questions when selecting the best hospice program. Hospices vary in the setting, number of staff and type of services provided.

  • What are the desires for end-of-life care and what are the desires for important members of your support group, such as family (i.e., counseling or spiritual services)?
  • Where do you want to die? At home? Another setting? Hospices vary in the setting and may be established in the home, a special facility in the hospital or an intermediate home-like setting.7Levy MH, AdolphMD, BackA, et al. Palliative care. J Natl Compr Canc Netw. 2012;10:1284-1309.
  • What type of services are you likely to need or want at the end of your life? Some hospices provide spiritual counseling services, which may be important to your loved one near the end of life.7Levy MH, AdolphMD, BackA, et al. Palliative care. J Natl Compr Canc Netw. 2012;10:1284-1309.
  • Do you want to receive any type of palliative care or life support therapy, such as palliative chemotherapy, or receive your nutrition intravenously? If so, confirm that the hospice permits or provides access to such treatments.
  • If local hospices do not permit desired types of palliative care, do you want to participate in an open-access hospice program?

Other options: bridge program

Some people decide not to go into a hospice at the end of their lives. For example, some people want to participate in day-to-day activities at home and/or continue to receive certain types of palliative care that would not be allowed in some hospices.8Messinger-Rapport BJ, Baum EE, Smith ML. Advance care planning: Beyond the living will. Cleve Clin J Med. 2009 May;76(5):276-85. For these reasons, a person may decide not to go to a hospice at the end of life.

If a hospice setting is not desired, then consider identifying bridge programs. Bridge programs provide palliative care, and some will provide this in a home setting.If your loved one decides against going to a hospice, consider obtaining palliative care consultation.8Messinger-Rapport BJ, Baum EE, Smith ML. Advance care planning: Beyond the living will. Cleve Clin J Med. 2009 May;76(5):276-85.


References

1 Grunfeld E, Coyle D, Whelan T, et al. Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ. 2004 Jun 8;170(12):1795-801.

2 Northouse LL, Mood DW, Schafenacker A, et al. Randomized clinical trial of a brief and extensive dyadic intervention for advanced cancer patients and their family caregivers. Psychooncology. 2013 Mar;22(3):555-63.

3 Badger T, Segrin C, Dorros SM, Meek P, Lopez AM. Depression and anxiety in women with breast cancer and their partners. Nurs Res. 2007 Jan-Feb;56(1):44-53.

4 Torpy JM, Burke A, Golub RM. Hospice care. JAMA. 2012 Jul 11;308(2):200.

5 Earle CC, Park ER, Lai B, Weeks JC, Ayanian JZ, Block S. Identifying potential indicators of the quality of end-of-life cancer care from administrative data. J Clin Oncol. 2003 Mar 15;21(6):1133-8.

6 Current Clinical Issues: The Debate in Hospice Care. JOP. 2008;4(3):153-157.

7 Levy MH, AdolphMD, BackA, et al. Palliative care. J Natl Compr Canc Netw. 2012;10:1284-1309.

8 Messinger-Rapport BJ, Baum EE, Smith ML. Advance care planning: Beyond the living will. Cleve Clin J Med. 2009 May;76(5):276-85.