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CancerLynx - we prowl the net
July 08, 2000

Things to Do For Metastatic Cancer Patients
Carol and Lee Law

Each person should make up their own mind about the priorities. This list is incomplete. You may think of other things which will improve the quality of care. It is also a guide line for what to prepare for in the advent of death.

1. Check out the house and see that there are no problems for the patient to get around. with a walker or a wheel chair. Especially with a patient who is on a long line of oxygen plan accordingly, for movement about the house. Watch out for pets, they like to chew oxygen lines.

2. Check the house is for accessibility: from the outside coming in, and inside going out.

3. Check for sharp objects and corners in the path of the patient. Fall proof the house. some medications and other conditions make a patient lose their balance.

4. Check with Hospice programs in advance. It is good to know what services are available. Your oncologist can help with a referral but interview several.
a) Check the patient load of each nurse and the number of times a home health aid, nurse and or social worker will come per week. Nurses and staff overworked and service provide bad services.
b) Do they have bereavement counselors, licensed social workers, chaplains to help with counseling and spiritual matters?
c) If you can, check on turnover of the workers, nurses, etc. You want a stable hospice crew to work with.
d) When on hospice, what medications, etc., will Medicare, pay for?
e) Do they coordinate oxygen if it needed and wheel chair rentals if they are needed, as well as porta- potty and walkers if they are needed?
f) Make sure that the home health aides are certified and licensed.
g) If you do not like the service, you should be able to have it changed. Be thoughtful of that.

5. A living will explains the patient's desires concerning what are called heroic measures of treatment, if the patient can longer make decisions for themselves. This is done usually to prevent heroic measures that prolong the patient's suffering. Make sure the Hospice,the Oncologist, the Family physician, and the hospital each have a copy.

6. A Durable power of attorney specifically designates the power to enforce a living will, and to make medical decisions, if the patient is unable to do so. This puts teeth in a living will, legally.

7. Make a regular will. If you don't, the state can decide for you what happens to a persons belongings etc.. This Is Very Important. Get an attorney to do it and file it at the county court house. Also have the attorney draw up the living will and power of attorney. Those soft ware packages [do it yourself kits] do not always allow for differences from state to state.

8. Visit some funeral homes. There are some out there where it is a pleasant, even home-like atmosphere. There are also funeral mills that couldn't care less. They are in it for the profit and not because they are humanitarians. If you want a wake, make sure food can be brought in. Some have kitchens, some don't. Get a sense of the director and his staff, and look over the physical layout of the funeral home. Look at caskets make decisions: burial or cremation. Pick the urn. If there is a cremation society in your state, check into it. It could save you a lot of money, and from making further decisions at a very stressful time when you are vulnerable. If you are already on hospice and have made funeral arrangements, let them know when the patient enters hospice. Go and look the place over again, check the arrangements, any staff changes, etc.

9. Set up rules of visitation. who can visit and when, how long they can stay. One advantage of hospice is they can play the heavy and set out a sign saying no visitors. In fact, there are those who will hover like vultures, no matter what you want. They do not mean to, they are just helpless, like the rest of us.

10. Counseling. A good hospice can provide it not for just the patient, but the family and friends. Bereavement counselors can help the mate and family the patient after a death. Anything beats tearing yourself apart with grief. If you are depressed, get something from the family doctor. It does not take a shrink.

11. Pick a place where you can go to get away from the patient, for your good and theirs. Even an hour will help. I like to go shopping. It is an escape, and a necessary one. Walk, Work out. Go to the library, the psot office, a museum...

12. Keep close family members, informed of what is happening with the patient. They will appreciate it. They are part of this process. They will think they know you and the patient better.

13. Join support groups, there are many. On the internet for instance, Association of Online Cancer Resources (ACOR) for both patient and the caregivers. They are well worth the time. A great deal of information and support can be learned in these groups. If you belong to a religious organization, the people there are ususally ready to be part of your support group. There is no higher calling than such services as you are giving.

14. Get comfort food for the patient to have around to munch or drink, crackers, dips, cheeses, candy, coke, or cocoa, if they are permitted. You'd be surprised at the variety of pastimes people require.

15. Go with the patient to each medical appointment. Listen to what is said and ask questions. Get copies of reports from cat-scans, mri's, etc. The docs don't always tell you what is in the reports. Do not be afraid, to question! Even oncologists can be replaced, if the philosophy does not correspond with the patient's needs.

16. When the treatment is given be supportive of the patient's desires. Some want an aggressive regimen of treatment, others opt for quality of life. It is the patient's choice.

17. Once the patient becomes metastatic - check with Social Security. This can be done by telephone. SSDI is automatic once this level of disease is reached. With SSDI comes Medicare and they pay for hospice and some meds.

18. Check with the hospice regarding after-death things that need to be done. This is a twilight zone emotionally, so you may need an outline to follow. There is no shame in finding someone to help you get it done.

19. Have the telephone numbers (or e-mail addresses) of people to call when things get bad. The family usually wants to be called in first, but there are exceptions to any rule.

20. Be sure to know where the patient's important papers are located, and what is owed on what, and what is free and clear. Keep track of credit cards and the like.

21. Be aware that there are vultures and buzzards who would make better company than humans who will call you and try to sell you things because they think you now have insurance money to spend. Your phone may ring off the hook.

22. And finally Take your own time to heal. Do not rush into relationships and do not make drastic changes, for a year or so. Lonesomeness can be a deadly enemy, but there are many and varied ways to defeat it. All you have to do is look around and find them.

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