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Palliative and Hospice Care

461961Palliative care

Palliative care can be defined as therapy that treats symptoms, but extending life is not the goal of palliative care. Examples of palliative care ranges from pain management to chemotherapy used for palliative purposes, which does not cure the disease but improves the patient’s quality of life.6 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.

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. Hospices are not intended to provide therapy that cures or extends the patient’s life. Depending on the hospice, this care may be provided in the patient’s home, special hospital units or other settings.7 Torpy JM, Burke A, Golub RM. Hospice care. JAMA. 2012 Jul 11;308(2):200. The type of support services provided by hospices typically involve 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.7 Torpy JM, Burke A, Golub RM. Hospice care. JAMA. 2012 Jul 11;308(2):200.

One of the challenges for patients at the end-of-life is that hospices vary in their practices as to types of palliative care or life support therapy provided.8 Current Clinical Issues: The debate in hospice care. JOP. 2008;4(3):153-157. For example, a study that evaluated 100 hospices found that 48 percent of hospices would deny patients admission if they wanted to receive palliative chemotherapy, 36 percent would deny patients if they wanted to receive palliative radiation therapy and 38 percent would deny patients if they wanted to receive nutrition through a feeding tube or intravenous therapy.9 Levy MH, Adolph MD, Back A, et al. Palliative care. J Natl Compr Canc Netw. 2012;10:1284-1309.

If you think that you may want to continue to receive life-support therapy or some forms of palliative care, confirm whether the hospices that you have selected will allow you to enroll and receive the therapy. If the hospices will not admit you based on policies, you may consider finding a hospice that provides an open access model. These hospices provide their services, in addition to allowing a patient access to certain types of palliative care.9 Levy MH, Adolph MD, Back A, et al. Palliative care. J Natl Compr Canc Netw. 2012;10:1284-1309.

You may want to reflect on the following questions when selecting the best hospice program for you. Hospices vary in the setting, number of staff and type of services provided.

  • What are the desires for end-of-life and what are the desires for important members of your support group, such as family?
  • Where do you want to die? At home? Another setting?
  • What type of services are you likely to need or want at the end of your life?
  • Do you want to receive palliative care or life support therapy, such as palliative chemotherapy, or receive your nutrition intravenously?
  • If you would like to receive palliative care that is not permitted at local hospices, can you be admitted to an open access hospice program?

Other options: bridge program

Some patients 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.4 Messinger-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, the patients decide not to go to a hospice at the end of their life.

If you decide that you do not want to go to a hospice, you may also want to consider obtaining palliative care consultation.4 Messinger-Rapport BJ, Baum EE, Smith ML. Advance care planning: Beyond the living will. Cleve Clin J Med. 2009 May;76(5):276-85. For example, you may want to find out whether you can obtain pain management, especially near the end of life.

If you decide that you do not plan to go to a hospice, then you should also consider identifying a bridge program. Bridge programs provide palliative care, and some will provide this in a home setting.4 Messinger-Rapport BJ, Baum EE, Smith ML. Advance care planning: Beyond the living will. Cleve Clin J Med. 2009 May;76(5):276-85.

End-of-life decisions are very personal and depend on many different factors that are unique to each person’s situation. You should involve your loved ones in your decisions since your choices will affect them as well. However, the choice is ultimately yours to make. Coping with the end of your life is very likely be the most emotionally difficult situation you have ever experienced, so seek out whatever support will help you and your loved ones through this time.

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References

1 Howlader N, Noone AM, Krapcho M, et al. SEER Cancer Statistics Review, 1975-2009 (Vintage 2009 Populations). National Cancer Institute. Bethesda, MD.Accessed at http://seer.cancer.gov/csr/1975_2009_pops09/, based on November 2011 SEER data submission, posted to the SEER web site, 2012.

2 Lockhart LK, Ditto PH, Danks JH, Coppola KM, Smucker WD. The stability of older adults' judgments of fates better and worse than death. Death Stud. 2001 Jun;25(4):299-317.

3 Ditto PH, Jacobson JA, Smucker WD, Danks JH, Fagerlin A. Context changes choices: a prospective study of the effects of hospitalization on life-sustaining treatment preferences. Med Decis Making. 2006 Jul-Aug;26(4):313-22.

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

5 Bomba PA, Kemp M, Black JS. POLST: An improvement over traditional advance directives. Cleve Clin J Med. 2012 Jul;79(7):457-64.

6 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.

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

8 Current Clinical Issues: The debate in hospice care. JOP. 2008;4(3):153-157.

9 Levy MH, Adolph MD, Back A, et al. Palliative care. J Natl Compr Canc Netw. 2012;10:1284-1309.