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3 Issues of Hospice

by: Robert Killeen MD

Three Issues of Hospice

I’d like to address three recurrent problems I’ve found in the field of hospice and palliative care. These three issues span our patient population regardless of their gender, race or economic stance. I would like to share the ways I view and approach these difficulties both as an oncologist as well as a hospice doctor. I hope that these perspectives are as helpful for the readers as they have been for me.

1) What is the “right” answer?
With hospice and palliative care I’ve come to accept and advocate that there is no absolute ‘right’ answer. This question plagues the patient and especially their loved ones as they try to address what course of action to take in hospice and palliative care. What I try to instill in these folks is the question of what is the ‘best’ answer. I work closely with them to discover, to reach, the main problems the patient is having and what is the ‘best’ way to resolve them. I focus their attention to the fact that there are a variety of ways to approach a problem and resolve it but that some ways seem better, easier or more tolerable than others. This is not deceptive in that I am not discounting treatments as right or wrong but, rather, as best, better or least helpful. As an oncologist I’ve seen many a patient undergo chemotherapy where the patient suffered worse than the tumor. Although the chemotherapy was ‘right’ in terms of tumor reduction it clearly wasn’t ‘best’ in terms of patient care. The wording, the ‘label’, is most important. As a recent GeriPal article concluded the ‘label’, the language of hospice and palliative care, can cause both inspiration and trepidation (1). Knowing that there is no ‘wrong’ answer may be the ‘best’ way to help a patient and their loved ones feel more comfortable with the choices they’ve made. It relieves their anxiety and may help to lessen their depression.

2) The fundamentals of depression.
Depression appears when people feel they no longer have a ‘handle’ on things, they’ve lost control. They may view their referral to a hospice as medical abandonment; their PCP or oncologist has given up. This invokes the terrible concept of “medical futility”. They dread the words “there’s nothing more to be done”. But nothing could be further from the truth. One of the first defenses to this depression is confronting it. Discover with the patient all the things making them feel helpless and hopeless. Then emphasize all the things they may not see, their options (2). Many times the patients have the ability to confront their problems; they often require only information to make their decisions. Patients are more likely to devote intense effort to their care at this stage in their lives (3,4). They have a myriad of medications to choose from for pain, nausea, vomiting and appetite – to make life better. Chemotherapy and especially radiation should not be viewed as contraindicated but rather as useful modalities in treating problems such as painful bone lesions or obstructive lymphadenopathy. Once patients see their many options and become more involved they may feel more in control of their lives and their depression should lessen if not abate entirely.

3) The dispersal of anguish.
A common issue I’ve come across in hospice care is that of personal anguish. The situation typically involves a single family member who acts as the power-of-attorney or the health care surrogate and must be encumbered with the responsibility of deciding life or death issues with regard to another relative. Some people find this burden unbearable and this anxiety leads to hesitancy, apprehension and the thought that their actions could be harming the patient. They’re not certain if what they advocate is what the patient would truly want. What I try to do in this situation is attempt to get the family (and even close friends if possible) of the patient and surrogate to be around them and to help them reach a consensus. This is especially helpful if the surrogate is undecided. This helps to relieve the surrogate of some of the personal sense of responsibility for the decision. They become something close to a final arbiter. They weigh their own thoughts of what the patient would like with the consult of others. They make the decision commensurate with what the family, the patient’s own personal community, feels. This approach, however, is least likely to work if the family is self-absorbed rather than patient-focused.

References;

1) Villars P. Maintaining relationships: stop using the words ‘terminal’, ‘dying’, ‘hospice’, ‘advance directives’ and ‘bereavement’ that push others away. http://www.geripal.org/2010/03/maintaining-relationships-stop-using_09.html 3/9/2010.

2) Wenger NS, Vespa PM. Ethical issues in patient-physician communication about therapy for cancer: professional responsibilities of the oncologist. The Oncologist. 2010;15(1):43-48.

3) Harrington SE, Smith TJ. The role of chemotherapy at the end of life. JAMA. 2008;299(22):2667-2678.

4) Matsuyama R, Reddy S, Smith TJ. Why do patients choose chemotherapy near the end of life? A review of the perspective of those facing death from cancer. J Clin Oncol. 2006;24(21):3490-3496.

Comments

Alex Smith said…
Interesting. RE the second point about depression - sounds like what you are describing is more along the lines of what some have described as "demoralization," rather than depression.
CyndiC, RN said…
On your point 3: I keep trying to reach people before they get into a position where they can't communicate their wishes. Even though we never know how we will actually feel until we are in that bed, if we put down our thoughts in an Advance Directive & choose a Surrogate(s)--we can relieve a lot of that anguish if we also have a conversation with our loved ones.

Explain that these are your wishes and they are not making any decisions. They are only supporting a decision that you have already made. Surrogates feel like they are deciding between life and death and our words only make this worse (What do YOU want to do?)

But a Surrogate is only someone who is supposed to protect a decision that the actual patient already made for themselves.

If we are able to get this concept through to the Surrogate(s)--and the rest of the key players--a lot of the guilt can be lifted...
As loving siblings, seeking hospice care isn't about giving up hope or hastening death, but rather a way to get the most appropriate care during the last phase of your loved one's life.
As loving siblings, seeking hospice care isn't about giving up hope or hastening death, but rather a way to get the most appropriate care during the last phase of your loved one's life.

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